JOURNEY OF MR. GEORGE GOSS FROM THE VERY BEGINNING:
Saturday, December 19, 2009
Christmas Market Saturday
First note. . . . Allan, thanks so much for your call. Sorry to hear your team didn't do so well. Maybe you should pick em' better! Anyway. . . nothing that a good glass of wine can't fix, huh?
So first thing Saturday morning I walked over to the hospital to get my second daily dose of Kepivance at the outpatient clinic. Sunday morning I'll have the third infusion and then they can remove the catheter from my arm so I can take a proper shower without worrying about getting the bandaging all wet. Small pleasures.
I'm also very glad the hospital is less than a ten minute walk over. I usually take a shortcut through a small park on the clinic grounds. With the thin layer of snow, it's a welcome change to the daily sunshine grind in California. . . . o I'm not going to pull any punches here. Today has been quite a cold day. It's a cold minus -9C and feels especially cold if there is even a small breeze. Almost froze my schnutz off. Yuko. . . bring gloves. And also a scarf. If you have an extra warm jacket, that too. And a hat wouldn't be a bad idea. And toe warmers, yup. And if you want to bring a few chemical hand warmers. . . well you get the idea. Luckily it's always warm inside, regardless of where you go here in Heidelberg.
The clinic usually has normal business hours (8-5, M-F) but there are still a lot of people on a rigid schedule (like me) that require a specific treatment outside of normal business hours. Seems like cancer doesn't follow the business clock. I was told to just go directly to my treating nurse during off hours. I'm sorry to say that I have forgotten her last name. It is usually rude to immediately address people by their first names in Germany because the society values a certain level of polite formality. But this very nice nurse insisted that I call her by her first name, which is Meike. Here is a picture of Meike on the right. . . .
Basically she runs the outpatient facility and provides very nice care to all the patients here. The outpatient facility consists of five or six separate rooms that have specialty treatment chairs that line both sides of the room, like this one (I took a picture of an empty room since I thought it would be rude to take a picture in the full room of patients where I am treated). . . . fter getting my Kepivance infusion Meike wrapped up my arm again and I headed back to the apartment. I'm just spit balling here and can't be 100% sure but I am an observant person, you know.
While walking out the main hospital door I was surprised to see 'possible' evidence that someone may have smoked nearby. Yuck! I would think that a hospital would have a 100% ban in a place like this.
Well, eventually, I'm sure. At least they make the smokers additionally suffer by standing in the liquid-
Nitrogen temperature weather to have a fag (yes, that's British English for "cigarette!"). Hey Frank. . . you weren't visiting here recently, were you? I'm going to do a DNA test to check.
And then let the Saturday (my last Saturday for a while) begin! . . . When I came back to the apartment
Judy had invited her good German friend Caroline over. Caroline lives less than an hour away toward
Frankfurt and previously spent a year in the California Bay Area. After an hour of topical discussions on global warming, politics and car repair, she graciously offered to both take us to lunch and also swing by the Christmas Market.
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Another important side note to all my eligible bachelor friends. . . . Caroline is available and a great catch for a decent guy willing to be a gentleman.
Like most German drivers I noticed that Caroline has superior driving skills compared with the average
American. Although that Is not saying much, Caroline can parallel park in one move. I love that and she has my undying respect!
We parked on the north side of the Neckar river at the Karl-Theodor Bridge directly across from the East end of Heidelberg Old Town. This is a pedestrian & bicycle-only bridge. Very nice walk (but almost froze my ears off). . . .
. . .I find the row of riverside buildings very nice and scenic. And entering old town from the bridge is like entering a castle. Pretty cool. . . . .
Carloline first took us to a very nice restaurant that had a very delicious menu where it's not just all schnitzel and pork brains. And as we usually find, the serving staff are friendly, helpful and very nice. I hope that Judy will be able to take Yuko here while I'm tied up with other things. . .
Following lunch we went out in the central old town plaza area where the Christmas Market is located.
So much nice architecture.
And in the plaza area this building is reported to be the oldest hotel in Heidelberg still in operation. It was built in 1342.
We were able to take some time to walk around the Christmas market where you can buy many
Christmas-oriented trinkets. They also sell mule, a heated spiced red wine. We didn't stop for any however. It was so darned cold we decided to stop at an inside coffee shop to get warm.
Later we stopped at the restaurant at the apartment and had some snacks. I have to very sincerely thank
Caroline soooooo much for taking us out today. Otherwise I'm afraid that I would have missed the best that Heidelberg has to offer. I won't get another chance to see these wonderful sights until the next time in the future I return to Heidelberg. Thank you Caroline!
I'm going to depart a little from all the good feelings I gathered from today's great activities and return to something I witnessed this morning while waiting in the hallway at the outpatient clinic for my medication to arrive from the pharmacy. As I was sitting there a German couple passed by me headed toward the end of the hallway near the windows. The couple was perhaps in their early-to-mid fifties and obviously husband and wife. The husband clearly had been through I stem cell transplant to treat some form of cancer, having no hair from the chemo. When they reached the end of the hallway they spoke at length to each other and the wife was quietly, but noticeably crying. And although I can't understand German, it was obvious to me that the husband, speaking in a very calming tone, was trying to reassure his wife. So they wouldn't notice, I very quietly snapped a picture without the camera flash.
A few minutes later when I went in to receive my infusion I asked about that man's condition and was told that the stem cell transplant was unsuccessful to cure his cancer. And knowing that stem cell transplants are usually done on people that will otherwise die from their cancer, it doesn't take a rocket scientist to know that he will likely not survive his disease. (Click to enlarge):
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The reason I tell this story is to keep my life in perspective. Yes this stem cell transplant and associated chemo is a very serious (and a little dangerous) treatment. But I'm not otherwise going to die of cancer and in general my overall risk of complications is not terribly high. Overall, my life is good. I have a beautiful wife and son, great friends (many of whom are reading this blog!) and get to work together with great professionals that I enjoy being around (go PlasmaSi !!). I'm a lucky man to be able to receive this potentially curative treatment for my MS and I also hope that (especially during the holiday and
New Year season) that you will also appreciate what you have. Not everyone else in the world has it as good as the rest of us.
So it was nice to go back to the apartment and see "our" Christmas tree. Reminds me that sometimes small things are all that I need.
Sunday, December 20, 2009
Getting ready for hospital check-in
Not much happened today. Calm before the storm. Primarily resting up for the hospital check-in tomorrow (Monday) morning.
A short video clip. . .
Monday, December 21, 2009
Day -8 (Hospital check-in & catheter insertion)
Today the hospital called me at about 10:30am. I then walked over to the hospital together with Judy and checked in around 11:30am. We met up with the nurse and she gave us a tour and explanation of the Ackermann ward. We quickly saw the hospital room where I will be staying and met my new hospital roommate. His name is Jergen and is closer to the end of his stem cell transplant recovery, as opposed to me where I’m still at the start. I’ll send pictures of the room on a future post. The main thing regarding the hospital stay is that it’s a little like 6th grade camp. The admitted patients are expected to follow a specific schedule (daily weight check, blood tests, medication timing, eating times, etc) and also expected to bus your own food trays and change the bed linens twice-a-week. So patients here are not babied. Everyone has to pull their own weight. No exceptions (unless I might have a problem walking at some point. Then they’ll step in and help.)
So first thing after getting the tour and lay-of-the land, I sat down with Dr. McClanahan to review the treatment plan and schedule. I spoke with her regarding my receiving this stem cell transplant for MS.
This will be her first time treating someone for an autoimmune disease (even though it’s exactly the same protocol as cancer), and she agreed with the basic science of the treatment (same as Dr. Raab, Dr.
Thalheimer and Dr. Hundemer). It seems that the only people that disagree with the treatment for an autoimmune disease are the very people that SHOULD be supporting it. . . clinical neurologists.
It became very clear very quickly that Dr. McClanahan is an excellent and capable practitioner. Her extensive experience is the key to keeping my treatment and prognosis of recovery to plan. In the afternoon we went to a special room with ultrasound to perform the procedure to insert the jugular
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catheter (it's actually called a Peripherally Inserted Central Catheter, oR PICC) that snakes down close to the heart so that the chemo drugs are dispersed equally throughout the body at the same time. Dr.
McClanahan, who performed the insertion procedure, is also a good surgeon. Following the catheter insertion I went down to have an x-ray to make sure it went down the superior vena cava vein near the heart, stopping about 2cm short of the pulmonary valve. I also saw the x-ray and it is exactly on-target!
Dr. McClanahan made the whole procedure much easier on me than I was expecting. I now have an insertion and sample port connected to my neck. Very convenient for chemo, saline drips and blood draws. They plan to remove it following chemo so a potential source of infections is eliminated following the ablation of my immune system. And although it looks uncomfortable, it doesn’t bother me. In fact, it’s surprisingly able to move with my head & body.
The chemo will begin tomorrow (Tuesday) so that the drug delivery from the pharmacy can be properly timed for the remainder of the week. The timing of the chemo drugs is as critical as the administered dosage. So the schedule is to administer the BEAM drugs per the following:
B Carmustine (BiCNU®) - Tuesday only - once
E Etoposide - Wednesday, Thursday, Friday, Saturday - twice per day
A Cytarabine (Arabinoside) - Wednesday, Thursday, Friday, Saturday - twice per day
M Melphalan - Sunday only - once
Then Monday will be the pause day (-1) without any chemo followed by the stem cell infusion (day 0) on
Tuesday of next week.
There are a lot of other details of what is going on here that I’m sure might be interesting to some of you. I’ll post some more of these details when I fall into the routine around here and really figure out everything.
Big news for me. . . Yuko will arrive tomorrow (Tuesday) evening. I haven’t seen her since I left for
Germany three weeks ago. I can’t wait to see her.
And very important. . . . . continued huge “thanks” to Judy for sticking around to help me (and soon,
Yuko)! This would be soooo much harder without her around. Thanks a million Judy! (Although, I bet she might be happy to have my lazy butt out of her hair!).
Last thing. . . a short video of someone I’d like to introduce to you. . . . .
Tuesday, December 22, 2009
Day -7 (First day of chemo)
First note: Johannes. . . .Thank you so much for your call today. I really appreciate hearing from you. I'm glad Tahara-san could hook us up. (BTW. . . are you sure MTSN is a great stock buy right now? Can I really make 350% on my money in two years? I'll go out and buy up 500,000 shares right away. Even though everyone else is telling me the stock is a dog. All because I trust you so much!)
Also, Yuko arrived today from Japan. We spent some time together before she had to leave to go eat something. I have implored her to go see the Heidelberg Christmas market tomorrow because it's last day open and if she doesn't see it with Judy tomorrow, then she'll miss it completely. I would be
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disappointed if that were to happen.
Onto the hospital adventure. . . I'm rapidly understanding and getting used-to the routine around here in the Ackermann ward. Another few days for Yuko and I and we'll have this things down pat! I explored the Ackermann ward little kitchen station a little more. They make available a few snacks and the
German equivalent of "Ensure" nutrition drink. That'll come in handy when I get mucositis. They also have a lot of sparkling water for the patients to take and drink at their own convenience (just like the other items). The medical staff told me that sparkling water primarily provided because it is likely to have fewer included pathogens as opposed to ordinary bottled water. But yuck! I hate sparkling water. I have to make it go flat before I drink it which is a time-consuming process. So I have to plan ahead if I want water. However, today I discovered the "other" refrigerator and they also have coke. It's not my favorite, but I like it more than that sparkling water crap. But to make things easier, today Judy brought for me several bottles of carbonated juice drinks. And a couple packages of cookies, too. I just discovered that she brought wafer cookies. My favorite! I love wafer cookies! Thanks a million, Judy!
Last night I went to sleep around ten thirty, or eleven. Slept well until seven this morning. My roommate, Jergen and I have similar sound emanations. So sleeping is no problem, we don't disturb each other during the night time. However, looks like every night at 11:00pm and then 4:00am the nurse comes in to take Jergen's blood sample. Probably they will do the same to me sometime after day 0. The nurses are quite considerate and I barely notice when they enter the room to take blood or give IV medication. They always turn out the lights when they quietly leave the room so we can continue sleeping.
Today my roommate Jergen is at day +19. Still within the outer range of the statistical norm for engraftment recovery, but still it's significantly longer than most on average. Somewhat unusual I believe. I hope that I will have indications of successful engraftment (rising neutrofils) by/before day +12 or +13. [Post transplant note: Signs of my successful engraftment manifested at day +9. Excellent recovery!] If Jergen goes much longer without signs of engraftment, I'm not really sure what steps the medical staff will take next. I wish he and his wife (who has faithfully been here every day, most of the day) the best possible outcome.
Because Jergen was here first, and much longer, I consider that he has squatter's rights. So he got the window position that automatically comes with a nice big shelf where he can put many of his things. He even put an X-box game console there! (He said his son kept the Wii for himself.) He's such a good roommate that I almost hate to see him get better and leave. Who knows what the next guy I get as a roomie is like. Maybe he snores the roof off! I think I'll clamp off Jergen's IV lines tonight after he falls asleep. :-)
And as a side note regarding visitors. . . ALL people must use the liquid alcohol hand sanitizing lotion
(dispenser mounted at each room door entrance) prior to entering. This applies to both the patient rooms and the small ward kitchen area. Although not specifically prohibited, I am going to opt for no hand-shaking or touching of other people (Yuko accepted, I can't hold myself back).
And of course I have the nearer bed. Perfectly fine for me. It's closer to the bathroom (which I'll explain in a second why this is important), and beats the US Navy submariner's situation where they have to
"hot bunk." That's where the space is so limited on a sub that there are fewer beds than sailors. So some guys have to sleep in a bunk while others are on-duty. At the shift change some guys jump into a bunk
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that is still warm from the previous sleeper that was there just a few minutes earlier. Darn! That would seem to me like sitting down on a warm toilet seat. Kinda creepy!
The bathroom is perfectly adequate for two people living in the same room space. I have additionally been instructed to clean the toilet seat with the available large alcohol wipes provided next to the toilet prior to each and every sitting use. I think that's pretty understandable. I should probably get a bucket of these for our home.
I wake up at 7:00am when in Germany it's still pitch black outside. Then I go for my shower while Jergen is still sleeping. Works great, although I try to be careful to keep my neck bandage dry.
So after I got up and showered at 7:30am I went out and weighed myself and reported back to the nurse while she recorded my BP, pulse and temp. She then gave me my five morning medicines (which I assume I'll take every day so long as I get them down), as follows:
Emend / Aprepitant – Anti emetic (nausea)
Kytril (Kevatril) – Anti emetic (nausea)
Fortecotin (German name) - Dexamethasone (US name)- Anti-emetic (nausea), anti-edema
Pantazol – Proton pump inhibitor used to prevent ulceration of the esophagus from chemo
Alna Ocas (German name) – Tamsulosin (US name) – For BPH
And as Dr. Raab had previously alerted me, the head of Heidelberg's entire bone marrow / stem cell transplant program (Professor Anthony Ho) came by with an entourage of about six or seven other doctors. I was immediately able to make a connection with Prof. Ho because he previously headed up the entire bone marrow transplant program at the University of California, San Diego (UCSD), my alma mater and hometown. He was gracious enough to pose for a picture together with me upon request.
In addition, Prof. Ho, same as all the other Heidelberg doctors (except the neurologist) also agreed with the foundation of valid science behind utilizing a stem cell transplant for a curative effect of an autoimmune disorder such as MS. As far as he knows, I am the first person to be treated for MS under his department leadership, validating the still-uncommon nature of the treatment outside of a trial.
Prof. Ho is aware of the phase II trials in the US, and even personally knows several of the key researchers in the field such as Dr. Richard Burt at NWU. He also agreed with the basic concept of my hypothesis that a totally & fully myeloablative therapy (of which I am receiving here) may be better than the lymphoablative therapy that Dr. Burt has been developing. The main development is that Prof. Ho said that they are getting Heidelberg's mortality rate consistently toward 1% ! So in the end it may turn out that all the work that Dr. Burt did on the lymphoablative protocol may be of little added benefit.
Time will tell, though.
Then around 11:00am I started my first single dose of carmustine (brand name BiCNU) of the BEAM protocol. So I already mentioned about melphalan being the nastiest of the chemo drugs. Well this drug, carmustine, is the second nastiest of the baddies. Like melphalan, it too is an alkylating agent derived from earlier mustard gas weapon technology and it still beats me as to how they figured out in the
1960's to adapt a weapon of war as a viable medical treatment chemical. It has a slower myelo toxic reaction with bone marrow compared with Melphalan, but when it kicks in it really annihilates the bone marrow stem cells. Exactly why I'm here. So it's OK.
The machine that utilizes a monitored drip IV infusion looks like this. . . .
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Now I gotta tell you. This machine is great. It can simultaneously administer two measured-dose chemicals, and also a regular drip saline solution on top of it. But here's the best part about this apparatus. . . It plugs into the wall to run on AC power. But with all the combined chemo drugs and extra ample saline solution going into my body that over several hours of chemo infusion I often have to pee every 10 minutes (that isn't a joke!). So I can simply unplug the unit from the wall and it automatically switches to internal backup batteries to operate. I'm not sure how long the batteries will last, but I think it's quite a while. Perhaps a couple hours. The important thing is that I can wheel the IV pole cart (which is on casters) to the bathroom with me and take care of business! I also can take it outside and walk around the ward if I want. Nice unit made by Braun. Guess they make more than just nice shavers.
So the nurses handle all the basic (but still critically important) stuff like IV's. But the chemo drug is administered by a slightly higher level person. (Perhaps they like to follow a more formal protocol for such dangerous chemicals going into someone's body?) The ward intern is Herr Sun. He grew up in
Germany, but his parents are from Taiwan. So he speaks perfect mandarin. I think we got some connection when I told him I used to live in Taiwan. His next step in a couple of years is to begin his residency here at Heidelberg University Hospital (he told me this is the place that is widely regarded as the number one medical facility in all of Germany, perhaps even in all of Europe. So long as you don't ask any French people). He will be a full fledge doctor in just a few more years (I almost wrote "tears."
But I think its the same thing). BTW. . . like all doctors here, his English is perfect. The nurses generally don't have "perfect" English, but is instead completely adequate for efficiently interacting with, and managing the patients.
So he brought in the carmustine drip bag (with a UV light shield protector bag on the outside). Just a little over one liter and adjusted the pump to infuse 450ml per hour together with Saline solution at
50ml per hour. Exactly a 9:1 ratio. Interesting.
So I could sit on my bed and get the chemo. Go to the toilet every ten minutes. Repeat. About an hour and a half in I a had a sudden onset of headache, what felt like pressure in my eyeballs and a completely new effect experience where my gums (and only my gums) started burning. Dr. McClanihan infused me with some antihystamine and had me take an acetiminophen hypothesizing it was a possible allergic reaction to the chemo. We then finished the bag of carmustine. She must have guessed right because I felt completely OK after about an hour and a half, to two hours later.
While Judy was in the hospital room visiting with me judy got to meet one of the two very nice ladies that maintains the sanitary conditions of the ward (a VERY critical job), Her name is Mercedes, born in the Phillippines. (Does that mean if she were born in Germany she would have the name Daimler?)
Anyway, Mercedes is extremely nice and invited Judy over to her home for a nice meal sometime over the next couple of weeks. How wonderfully nice! She will definitely be getting a box of Yoku Moku cookies.
And then at the end of the day the nurse came in and changed all the adhesive bandages that keep my jugular catheter in place.. She did a very nice job. It now looks like I have decorative tassels hanging from my neck.
More tomorrow when I will be receiving four doses (more than 4 hours total) of both Etoposide and
Cytarabine.
So this is an important last note regarding numerology. And I didn't tell Yuko about this before she left
Japan but the number of the room is "4." In Japanese the sound of the number four (Shi) also is the
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same sound of the word "Death." This is why you never see buildings in Japan with a 4th floor, nor will you ever see a hospital room in Japan numbered 4. Hope she's not freaked out by that. Anyway, actually my favorite number is the number four. When I was in cub scouts I won 4th place with my pine-wood derby car that I also numbered 4. So there's gotta be some luck somewhere with the number! I think it will pull through to the end.
More next time.
- George
Wednesday, December 23, 2009
Day -6 (with updated schedule)
Current (and more complete) schedule (click to enlarge). . . .
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Thursday, December 24, 2009
Day -5 (Christmas Eve)
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Quick message including mention of my good friends at Mattson . . . .
So I'm able to follow a pretty regular hospital schedule now. . . . Wake up around 7:00am (still dark outside), shower (thanks to Yuko and Judy for the liquid body soap from the store, it's great!), dress and then go weigh myself and then get the usual morning tests from the nursing staff. They always ask if I feel any nausea from the chemo. Nothing yet. Can still eat well (the hospital food is far better than I expected. And better than any airplane food I've had). Maybe next week things will change with the nausea. Who knows. Everyone responds differently from chemo. I'll keep my fingers crossed.
Then I get my two infusions of chemo (Etoposide and Cytarabine) starting at 8:00am. Together with the saline flush that follows it about a three hour process. I repeat the same thing at 8:00pm. I usually make it to sleep about midnight. Yuko will stop by again later today and we can go out into the quiet hallway of the main hospital and talk junk behind people's backs. (No! We would never do that. Well, Yuko would never do that.)
A few things are becoming apparent . . . the first thing is that I am currently gaining weight. I've gone up
5kg and now total 70kg (154 lbs now but started at 143 lbs). I think this is a direct consequence of the anti-emetic steroids I'm taking to stave off the nausea that causes fluid retention. I'd rather take the weight gain over the nausea any day. I hope it lasts through the treatment, but that may be wishful thinking. But even if it doesn't last there are many more options of various anti-emetic drugs remaining in the arsenal. May have to try a few others next week.
The next thing is that my systolic blood pressure for the past couple of days has been hovering around
140, quite high. My BP has never been more than 120. Again, this is most likely a direct consequence of the steroids I'm taking. After the treatments are over and I get off the steroids the doctors assure me that my BP will return to normal.
Also not (yet) a big deal, but I’m starting to feel some tissue roughness on the roof of my mouth. I suspect this is an early indication that mucositis is on the way. I’m super grateful that Dr. Raab authorized the Kepivance (Palifermin) prior to the chemo. If I do get mucositis then it is likely to be far less serious that it might otherwise be. Somehow Yuko and I will have to find a way to repay him for helping me tackle this early on.
Yuko and I spent time together today and she got to meet my new Japanese roommate, Tateishi-san, along with his wife, brother and father. (Cooincidentally Tateishi-san and I are the same age, separated by just a few months.) Tateishi-san has multiple myeloma (he gave me permission to mention this) that was first treated with straight-up chemo. That turned out to be a failed treatment, hence then moving onto the more aggressive stem cell transplant. I’m sorry he has to go through two rounds of aggressive chemo. Kawaiiso desne! But he has an amazingly positive attitude for having to face such hardship.
Today Yuko and I met his wife and we saw pictures of his two children, ages 8 and 1. Unfortunately (or fortunately) they don’t let children in the ward due to the high risk of infection. Same reason Riki is in
Japan with the in-laws.
I think Obaachan (grandmother in Japan) is doing a great job to take care of Riki. I have no idea yet how we will repay her and the family for their kindness and endurance to do the critically important task of caring for Riki while we are here in Germany. I suspect fine California wine will somehow be involved.
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A picture of Robert taking Yuko and Judy to old town. Thanks again Robert, you sweetheart!!
BTW. . . all my Japanese friends will like this one. This is the sign in the restaurant (obviously) indicating the restroom location. The server told Yuko that the left sign (in Japanese) was initially mounted upside down for a long time because the Germans there can't read Japanese and didn't know any better.
Apparently after a long time some Japanese person mentioned it to them and they finally righted it. I wonder if any Japanese people were forced to pee while standing on their head?
Last note to Bernahard. . . thank you so much for lugging that wheelchair box (that included my filter masks) all the way to Munchen. And thanks for shipping to our apartment here in Heidelberg. Got everything yesterday, including the brown-sugar cinamon pop-tarts that will keep me alive after I'm discharged from the hospital It was a VERY nice surprise and gift of kindness! We'll celebrate more when you come to Heidelberg. At least Yuko will be able to Qaplah! with you on my behalf.
Merry Christmas eve to everyone! - George & Yuko & Judy
Friday, December 25, 2009
Day -4 (Christmas Day)
So Merry Christmas to everyone!
Sorry. This is the only "official" Yuko & George family Christmas portrait for this year. It'll have to do cause it's all you get beyond our sincere thanks & appreciation to everyone. But just in case it's not obvious, I am extremely happy that Yuko is here with me during this whole process. I hope that I'll be able to make it up to her in the future.
And most of all, Happy Birthday to my Mom !! (Yes, she's born on Christmas day. That's why her nickname is Christmas Carol.) I still can't imagine how many b-day & Christmas presents she was yippedout of over the years for the intersection of those two simultaneous events in her life. I'm hoping to come back healthy and have her as the special guest of our party in 2010.
Also. . . Dr. Raab stopped by today to wish me a Merry Christmas. I was so happy to have seen him today. What a great guy.
Just a quick video recap of the day's medical activity for me. . . .
Also, today my roommate, Tateishi-san, whom we now consider each other brothers because of having to endure essentially the same stem cell transplant procedure, was visited by his wife, beautiful two daughters, younger brother and father. He invited me along to meet them, which was very nice. The young girls are not allowed in the Ackermann ward to reduce the chance of spreading infections, so we all met up in the hallway outside the front door. We put on masks to reduce the chance of picking up any infectious agents, especially considering that Tateishi-san is currently neutropenic and has zero immune system. I'm not quite there yet (will happen next week for me) but since I am his roommate I want to be sure he is not exposed to anything potentially dangerous.
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So I said I would mention a little more regarding the hospital food. Gotta find some time to be a critic to keep me busy. . . . . The hospital offers a meal preference selection menu that I completed and turned in. It basically allows a choice between a red meat selection and a non-red meat selection (which might be chicken fish or vegetable). I thought I had checked the non-red meat selection for every day.
The meals here follow the same daily pattern. Morning meal is very light, usually consisting of some bread, cheese and a light vegetable broth soup. They also provide coffee or tea. Neither of which I drink.
I just opt for the orange soda or apple juice that Yuko brought for me. Perfectly fine for me since I usually never eat breakfast anyway. But I have to take my morning medicine doses with some food, so this turns out to be perfectly sufficient. It all tastes fine.
The lunch is always the largest meal. For my Christmas lunch today I had a very nice tasting vegetable lasagna in a cheese-pesto sauce. Quite tasty and I ate the whole thing along with a small salad, fruit cup and a few cookies thrown in for this special day.
As you can see the dinner is also a very small meal, which is typical. I'm not sure if I or the hospital messed up on the menu selection. It looks like they provided me with roast beef. That's disappointing. I just ate the cheese, bread and butter. I have been saving some wafer cookies I can snack on later if I need to fill up a little more. Hopefully all my future meals will omit the red meat.
BREAKING NEW FLASH **** It's now 7:45pm here and Yuko said she and Judy can bring over some smoked salmon for me. Yum! I love smoked salmon. I just cleared with the nurse and I know I'm going to enjoy that. They'll start my first chemo bag in a a few minutes and then I can meet up with them and get a quick bite of that salmon I'm dreaming about right now.
Looking forward to the last day of chemo this coming Sunday! Then my new "birthday" with the stem cell infusion on Tuesday following a one-day break to clear the chemicals out of my body. Of course then the biggest downside will come soon after. . . . the dreaded neutropenia. But when it happens, that is the confirmation of totally resetting my immune system to cure my MS. I can endure it! I'm sure. And
I'm looking forward to a better future quality of life myself, and more importantly, my family!
Saturday, December 26, 2009
Day -3
Just a brief video today from George & his angels. . . . .
Day -2 (Sunday - Last day of chemo)
In the evening Yuko & Judy brought me some cheeze pizza (my favorite, and yummy). . .
And some pictures of Yuko & Judy's Heidelberg outing day. I think the images should be self explanatory,
I think. At least I think they had some fun. . .
Monday, December 28, 2009
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Day -1 (chemo rest day)
Just posting the updated info on the current schedule first, followed by today's message (click on schedule to enlarge). . . .
Just one more day waiting until I get my life back in the form of a cryogenically frozen bag of my own stem cells. . . . So today is a simple day of getting some saline solution and drinking plenty of fluids to purge any remaining chemo drugs from my body in preparation for the stem cell infusion tomorrow so that the stem cells have the best possible survival and engraftment opportunity. Following the stem cell infusion (either the same day as the infusion, or at sometime after that, depending upon Dr.
McClanahan's judgment) I will receive a single dose of Neulasta G-CSF. This is really a fantastic drug that promotes stem cell replication, mononuclear cell mobilization and immune recovery to get my immune system back up and healthy at the earliest possible time. Neulasta is a relatively newer G-CSF drug (also an Amgen product just like Neupogen) that has a self-limiting negative reaction co efficiency in which it works constantly and as hard as possible to restore the immune cell function in the bone marrow. As the immune system recovers toward a normal level the Neulasta drug (administered as a single SC injection) becomes consumed and tapers-off it's active pharmacologic effect. So basically, it works as long as required and then extinguishes it's own activity when no longer needed. Probably why it's also an expensive drug. I'm expecting it to be well worth every penny of the cost. Especially since I should be able to expect the most rapid recovery possible with it's use. I'm going to have to check into buying some Amgen stock.
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Different subject. . . . sometimes small things perk me up (other than Yuko & Judy's fantastic help and support here). The first of which is that I measured in my reduced water retention weight at 67.1kg this morning accompanied by my totally normal & usual BP level of 120/70. I'll keep my fingers crossed that it will not rise again. At least not to the level seen before.
And then I just wanted to make one more comment about the hospital food. Honestly, I think the kitchen that prepares the food here at Heidelberg University Hospital does a very good job. No joke.
Today I had a very delicious chicken in a sauce and potatoes together with some salad and a nice minestrone soup. That hit the spot!
In anticipation that my stomach will likely eventually become weaker to take more solid forms of food, I went by the hospital cafeteria and picked up some extra packs of chocolate pudding and fruit pudding that I can eat when I don't feel like solid stuff later. I just store it in the ward refrigerator until I need it.
Yuko suggested that I might also try some jars of baby food that they also store and provide to patients that might need it. What? I suspect she's trying to tell me a different message. Yuko! . . I'm not whining
THAT much, am I?!
My new "Birthday" tomorrow with a simple stem cell infusion. I will get my life back, and just as important (the whole reason I'm here!) this will mark the major milestone for curing my Multiple
Sclerosis! I do believe that based on the overall published scientific data, it should be just a matter of perhaps a year, or less and I will come to realize that I will be cured (halting of disease progression) of
MS. And then I'll also have better-then-even odds that I will also be able to experience a reversal of actual disease progression. Although not guaranteed, my EDSS score of 3.5 bodes particularly well for the distinct possibility that I will be able to actually run again and be physically active with my son, Riki.
I'm looking forward to the one-year stem cell transplant party we will plan for December, 2010 (where the Heidelberg medical staff will be invited as special "hero" guests) so that I can personally demonstrate my recovery and improvement.
See you tomorrow for the simple, but important day!
Tuesday, December 29, 2009
Day 0 - Stem cell transplant / infusion Birthday
It's now Tuesday morning here in Heidelberg. Yuko and Judy have arrived for the big day and snapped these pictures to memorialize the event of the day. And today IS the day! And it could almost go unnoticed because my stem cell transplant infusion procedure only takes a matter of minutes to complete. Perhaps about fifteen-to-twenty minutes, or so. It could easily be described as anticlimactic.
But that description beguiles the real significance of today’s event. This isn’t just about me getting life handed back to me in terms of surviving the destructive chemotherapy (although I have to admit this is an important part of the event). No, the real issue in my being here going through this marks the turning point for curing my MS. This doesn’t mean that I won’t have some temporary worsening of existing MS events & symptoms in the near term. I expect temporary transient worsening of my existing symptoms for perhaps several more months due to the general chemo stress on my body. [Post transplant note:
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actually the only MS-related symptomatic worsening I experienced was slight, but noticeable leg spasticity. However, as expected, this was only temporary and it completely resolved in a matter of a few months. Other than this, I had no added MS symptoms of any kind.]
Instead, what today significantly marks is that the underlying etiology and root cause of my Multiple
Sclerosis is going to be immutably changed for the better. I completely believe with all my heart (and foundation science) that today is the seminal day of fundamental and positive change by means of what most people would probably consider this aggressive therapy. But I have confidence that in the long run and end, this will pay off in spades for me and my family. I think that within the next year it will likely become clear to me that my MS disease activity will be stopped in its tracks. And then on top of this, there is a good likelihood (>60% chance) that I will see actual reversal of existing deficit caused by the
MS. [Post transplant note: This was too conservative of a time prediction. By +6 months it became clear that my disease was both stopped, and reversing. As good as I could have imagined it would be.]
So bottom line. . . this day marks the transition to my "completely new & improved" immune system that will likely be MS-free going forward. At this point I think there is little more to say beyond this comment since in a scientific and clinical perspective it will take some more time to show & prove the actual result.
George's stem cells during re-infusion. At first glance it doesn't look like that much. Hard to believe that's my future life & health in that bag. . . . . .
ALL DONE
Just a side note to anyone considering this treatment for MS. . . prior to the cryopreservation of the stem cells a chemical preservative with the acronym of DMSO is added to the stem cell plasma solution to help reduce the destructive effect of the liquid nitrogen temperature on the stem cell walls. Basically it helps to somewhat protect the stem cells and make more available for the beneficial engraftment effect once they are back in my body. However, DMSO has a tendency to cause a sudden, but common acute side effect that feels like chest tightness. As if someone sat on my chest and a little bit restricted my breathing. Dr. McClanahan administered an antihistamine prior to the procedure in anticipation of this effect. It must have had some benefit because it only lasted about fifteen minutes, and then resolved.
Last note. . . I can't detect it myself but DMSO gives off a strong garlic/onion odor from my body for about 24 hours. This evening Yuko and Judy said I really stink of garlic!
Time for me to hit the sack. Hope everyone is getting ready for a great New Year celebration this week!
Wednesday, December 30, 2009
Day +1
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Today I have compiled my relevant blood test result numbers in the following image (click to enlarge).
My leukocytes (all combined five white blood cell types in the human body) are dropping fast. The normal range is usually above 4000 / nL. This morning's blood draw tested out at 1350 / nl. So everything is going per expectation and I should be neutropenic (zero immune system) definitely within the next 4-7 days, for sure. One consituent of the leukocyte family, called a neutrofil (a type of white blood cell that specifically attacks bacteria and fungi) is also an important number to measure. The neutrofil count is also quite low at 1000 / nL. Eventually that will also hit zero.
Just in case you want to understand more about the various leukocyte cell types circulating in the bloodstream and their specific functions: http://en.wikipedia.org/wiki/Leukocyte
So basically everything is going as expected. I have been warned that the worst side effects are yet to come. But they should last about a week, maximum. I still haven't had any nausea yet, nor any overt indication of mucositis. But my stomach is definitely unsettled. For the past three mornings I've had some strong discomfort with what feels like eosophageal acid reflux [post transplant note: this is the one mucositis lesion in my esophageal passageway I got from the chemo]. The nurses gave me some antacid liquid I can take when this occurs. It does not have an instantaneous effect and takes a while to kick in. But eventually it seems to do the trick.
For food, more often I'm turning towards the pudding and pasteurized yogurt with a little fruit in it.
Jergen suggested the pear & apple baby food for when it get's really bad. I think I probably will do that.
Also. . . This morning the nurse removed my neck catheter. The upside is that it will be much better for me to take a shower without having to worry about keeping it dry. On the other hand, I'm going to now have to get stuck daily with needles for the blood tests and/or medication they might need to administer.
And thing to last note. . . . . daily tablet medication. . . they dropped my three steroid anti-nausea steroid medications and have added twice-daily Trimethoprim (Bactrim) wide-spectrum prophylaxis antibiotic as an added measure of infection defense.
Yuko and Judy bought some non-alcohol champagne for me to share with some of the fellow patients in the Ackermann ward during New Year. I hope your New Year will be a step-up compared with my scenario.
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See you tomorrow!
- George
Posted by George Goss at 6:22 AM 0 comments
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Thursday, December 31, 2009
Day +2 (New Year Eve)
First note. . . Tahara-san & Yasuko-san. . . . Thank you! You are very kind (we all already knew that) and
Yuko and I are looking forward to returning the kindness in the new year! Can't wait.
And another issue of great importance. . . . Judy left today to spend the night at Frankfurt airport before leaving tomorrow for a flight back to SFO. Judy, you have so greatly helped us more than my words can express. Thank you times a thousand times! We're looking forward to showing a true appreciation of your (and Tif, too!) sacrifice in the New Year. Here's to wishing you a great flight!
Current blood count numbers (click to enlarge). . . . .
My white blood cells are dropping precipitously, along with the platelet count. Just as expected. So no surprise here. I was told that once the neutrofils drop below 1000, they don't bother measuring them.
So I'm below that threshold now. However, I also got to know my past three days of platelet counts, also an indication of the stem cell activity in my bone marrow (or in this case, the lack of activity).
Based on the current blood count numbers the nurse gave me specific instructions for my behavior going forward (until my blood counts come back to life), including the following:
 Be careful what I eat! - absolutely no salad or anything raw! And no probiotic yogurt, unpeeled fruits or vegetables. Most things that are commercially processed and packaged are probably
OK, so long as I check with the nurses first. Chocolate pudding is fine, of which I will probably be
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 eating a lot of that over the next ten days. My stomach is still unsettled. It may worsen. A lot.
Where's my lucky rabbit's foot when I need it?
I have been instructed to inspect my skin every day for bruises due to low platelet count and
 report if I find anything.
I now have to observe strict sanitation rules; can't be around any sick people and need to wear a filter mask when I walk outside the room.
 I'm told that the vast majority of people experience idiopathic fever that may last the full ten
 days. I'll report on that as it develops. [Post transplant note: Yes, indeed I did have an extended fever. Just like the majority of people undergoing the same treatment. It's normal & usual.]
I can now sense change in the epithelial tissue of my mouth. Anyone know any witch-doctor spells to cast away the evil mucositis spirits?
And then the small pleasures. . . . It was nice to take a shower this morning without the catheter sticking out of my neck. I think I did an improved job of getting clean.
I expect to be mostly tired and/or sick over the coming ten days, always looking forward to when the leukocyte counts start to improve. I hope Yuko will be able to somewhat enjoy her time around town. I will have to get my entertainment vicariously through Yuko.
Today Frank drove down all the way from Dresden to be here for New Year. Thanks, Frank! (BTW. . . you can take Yuko, but you can't have Riki!) I'm glad that Yuko and Frank will be able to ring in the New Year together. . . .

Comments:
From: Allen
Subject: re: CCSVI
Date: Friday, June 25, 2010
Hi George,
Thanks for your post on CCSVI. It's always good to hear from both sides. I just stumbled upon your blog and look forward to reading more about your stem cell procedure. I've read some vague accounts in the news so it will be good to get more in depth info.
I'm curious what your thoughts are on the only scientific study on CCSVI (at least that I'm aware of):
"CCSVI prevalence was 56.4 percent in MS subjects and 22.4 percent in healthy controls.
In this large MS cohort, the presence of CCSVI did suggest an association with disease progression" http://www.buffalo.edu/news/10937
I feel like there's a lack of evidence to disprove or prove CCSVI, and given this study it is probably something worth more research.
Thanks, Allen
From: George Goss
Subject: re: CCSVI
Date: Friday, June 25, 2010
From:
Hi Allen,
Thanks for your e-mail and insightful comments. I appreciate hearing from someone that can look at both sides of the issue without getting hostile.
And thanks for reading the blog. If you would like to read the beginning, it gives a fairly good summary of what the stem cell transplant cure is all about and overview of what I did. This is the first post (at that
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time I didn't know for certain that it would cure me. But it has worked out wonderfully for me and cured me, as it does for more than 80% of those undergoing the procedure.). . . . . http://themscure.blogspot.com/2009/11/introduction-to-voyage.html
Also, your comments regarding CCSVI are very astute. I'm glad to see someone that looks at the information objectively instead of a visceral emotional and irrational reaction that many people in the
MS community have. It's troubling to see people treat CCSVI as if it were curative dogma since nothing as such yet exists. (Not even a stem cell transplant.)
Regarding the subject of some correlation between CCSVI and MS. I think you are correct that there may indeed be some relationship between the two. However, the way I look at it it's a matter of "the dog wagging the tail," or "the tail wagging the dog." I believe that it is conceivably possible that there may be some factor of blood flow that is the result of an autoimmune disease, but unlikely to be a causative factor. Looking at the fundamental etiology, it is quite difficult for me to reconcile the alreadyestablished causality of autoimmunity for MS and the features of what CCVSI is purported to be by it's advocates.
It would be fantastic if I were wrong. But the already-existing data on autoimmunity as a cause of MS is so very much overwhelming, it's difficult to imagine that all those man-years and clinical trials already expended (and ongoing) to be proven wrong. If that did happen, it certainly would turn science on it's head.
Regardless, you have brought up great questions and it has made me think about this since so many people desire more detail (and actually "answers" that don't yet exist). I will enjoy to look into the specific details of the UB study to dig further. In fact, after I look at it more I think I will even give Dr.
Robert Zivadinov at UB a call to ask him some questions myself.
I'll definitely let you know if/when I find out some more info that might be relevant.
Best regards, George
Follow up comments by George Goss on June 26, 2010:
No need for me to dig into this any deeper. I read the study design, protocol and results. There is no doubt it was a properly conducted study. But by design the study does nothing to associate "causality" of MS via CCSVI. So all the study indicates is that more study is required. It provides no additional hope of a CCSVI cure beyond the unsubstantiated claims already made by Dr. Zamboni.
Bottom line of the study result summary. . . . . people with clinically definite MS are roughly twice as likely to have narrowed (or slightly restricted) jugular veins compared with people without MS. But the study did nothing to address the understanding or underlying reason of why this occurs (which is the
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additional study required). And also, why do 22% (a very large and significant number) of people in the study that have redistricted veins not also have MS? I go back to my consistent previous contention that it is more likely that CCSVI has a non-causative association with MS, and is not itself the cause.
So even if CCSVI as a cause of MS were proved correct, based on the results of this trial only about half of all people with clinically definite MS could be cured. That is far lower than the 80%-85% of MS patients that have already been shown to be cured with a stem cell transplant. So which one is the cure?
Food for thought. . . . . there is a substantially stronger correlation between T-cell loading and MS disability progression than there is with CCSVI and disability progression (which is why immunomodulator drugs have a significantly positive impact at reducing MS progression). So if weighing these CCSVI study results in the most favorable light versus the pharmacological studies of immunomodulators, the preponderance of evidence still stacks up overwhelmingly in favor of MS being an immunological (autoimmune) disease.
Just so I'm not beating-around-the-bush. . . MS cannot be cured by CCSVI treatment, and the latest clinical trial does nothing to dissuade my thinking in this respect.
By the way. . . I'm all for more research on CCSVI. There is clearly some relationsip between MS and restricted jugulat vein(s). I'd really like to know why. More knowlege, not less is always better. It's just troubling to see so many people understandably looking for a remendy for thier MS and and then irrationally jumping on the CCSVI "cure" bandwagon with absolutely NO scientific evidence that it has
any positive impact on MS, as is the case today. from: Rose
Subject: Why say hoax?
Date: Monday, June 28, 2010, 2:19 PM
Greetings,
I came across your blog in my endless search for Internet knowledge and was drawn to your post because of your choice of words. Now, that may be why you used that word but I find it interesting that there are a few people (or perhaps more-I know I don't have all the info) out there that keep arguing against CCSVI calling it a hoax, more specifically to the treatment and its effectiveness. I think CCSVI is not a hoax but an expansion of previous ideas and research by many other people. Some of the research has not been connected to each other and I am unsure how much of it all that Zamboni et al have even reviewed. I do know that it is known in the vascular world that stenosis in the vasculature, anywhere in the body, is not good and needs to be corrected.
I have come across a lot of research and case studies done that points to a link between vascular stenosis and neurological damage. I do not argue for the MS-CCSVI causal link, I have a feeling it is more complex than a simple stenosis issue; but I do see a certain validity to the underlying vascular issues.
Especially since so many interventional radiologists are now pulling blood clots from MSers veins.
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Of course this raises the question, what was their diagnosis status? Mine is solidified by only 2 of the 3 requirements, I have no lesions. Does that make my diagnosis questionable? Unsure. But many MSers have been diagnosed based on less than what I have been. How many MSers truly have MS? Without perfectly strict rules, it is impossible to say. The McDonald Criteria for diagnosis have been changed over the years and are, well, a bit on the flexible side for diagnosing patients.
Getting back to the hoax issue, what about the diabetic and cancer patients that experience neurological damage symptoms when it is discovered they have developed clots or stenoses in their veins because of long term catheters used for their treatments. Once those veins were cleared, their neurological symptoms were alleviated. These issues are not hoaxes but then they are not linked to MS. (I have that research somewhere, just have to dig it up...if you are interested.)
There is a 2007 paper "The Differential Diagnosis of Multiple Sclerosis" (Rolak & Fleming) that lists as an option for partial diagnosis "Table 2. #11. Cerebrovascular disease" and in "Table 4. #2. Arteriovenous malformation." So here we have another potential for a vascular issue with neurological symptoms and an issue with diagnosis.
There is also the argument for or against the autoimmune part of MS. A 2004 paper "Multiple Sclerosis is not an autoimmune disease" (Chaudhuri & Behan) puts up a convincing argument against. But I am still on the fence as far as which it is or isn't but as new discoveries are made the more we will know.
This 1999 neurosurgery paper "Endovascular Recanalization with Balloon Angioplasty and Stenting of an
Occluded Occipital Sinus for Treatment of Intreacranial Venous Hypertension: Technical Case Report"
(Neurosurgery, April 1999, Vol. 44, Is. 4, ppg. 896-901) is an extreme case, but shows that such stenoses do cause neurological problems. Would it not be safe to say if such a stenosis were gradual, say over a period of years even decades they could also create such damage and symptoms?
Basically, why say hoax when it really is an issue of disease relationship. Perhaps Italy is right in separating CCSVI from MS? There is still so much to learn and discover in all of this.
I enjoyed reading your post, I hope my terribly longwinded response did not bore you too much.
Cheers,
Rosie
From: George Goss
Date: June 29, 2010
Greetings Rosie,
Thank you for you message. All of your comments are lucid, relevant and make complete sense to me.
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And first off. . . . thank you for highlighting my use of the word hoax. Now that I have thought about it the word got close to my intent, but was not precise enough. I have changed the blog title to reflect a more precise nomenclature. I use the word mythology because there is absolutely no curative data for
CCSVI treatment of MS, but there seems to be so much irrational belief in it in it anyway. It really makes me wonder why would so many people put their faith into a procedure that has absolutely no demonstrated curative benefit when stem cell transplantation shows such good curative results?
And regarding your note of vascular causes of neorologic problems. I agree, I'm certain there are a great number a syndroms associated with vascular stenosis (such as diabetes). I just feel confident that MS is not one of them. And for one reason. . . . there is so much immunological clinical trial data developed so far that squarely puts autoimmunity in the spotlight as a cause (or "action," if you will) for MS.
Combined with the dearth (non-existence, actually) of CCSVI causal data, this makes me defer to what has already been shown with "real" curative stem cell end-point data. CCSVI does not fall into that category whereas stem cell transplantation does. It appears to be a serious uphill battle if CCSVI is to displace the immunological model as the etiology for MS. And that means beating an 80%-85% cure rate that stem cell transplantation has already demonstrated in multiple scientifically clinical environments around the world.
Best regards, George
From: Rose
Subject: CCSVI
To: "George Goss"
Date: Wednesday, June 30, 2010, 8:53 PM
George,
You make a good point on the etiology issue. I am pretty convinced that there is just not enough data to put CCSVI at the top of the causal list for MS. Or even in the top ten; but that remains to be proven definitively.
I think stem cell therapy is a great option; it just has a long way to go and a huge conservative religious right to overcome here in the US. Mind you, I am not one of those people. I have found that no matter how much you argue that stem cells can come from other sources that are not embryonic, many of these individuals will not allow such things to sway their opposition. They believe that any stem cell research can create a path to embryonic...and well, the argument has no end and I usually just find a reason to get out of the conversation. :)
I must also say I have an issue with the term "junk science" for Zamboni's work; but perhaps that is how all different opinions and out-of-the-box research is described until there can be a significant amount of verifiable corroborating evidence. What about the Australian pair that discovered a bacterium as the source of peptic ulcers?
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http://www.nndb.com/people/899/000136491/
"His work was not received enthusiastically. In Marshall's words, "When I was criticized by gastroenterologists, I knew that they were mostly making their living doing endoscopies on ulcer patients. So I'm going to show you guys. A few years from now you'll be saying, 'Hey! Where did all those endoscopies go to?' And it will be because I was treating ulcers with antibiotics."
Should be an interesting next few years of research for and against CCSVI.
I wonder, how do you feel about the entire hubbub in regards to MSers who have had the angioplasty and are experiencing significant changes to their MS symptoms? Do you also feel that the personal experiences are a result of the placebo effect? If so, what does that say about our MS symptoms that they can be fixed with a placebo and not the drugs that we take daily? Or is it all just smoke and mirrors?
I have to admit, I am quite amused by the next stage in BNAC's study involving the 'fake' angioplasties they are reporting they will include in their study. How exactly do you fake a catheter going through someone's body and inflating a balloon in their neck? We have heard, and see, so many accounts of the angioplasty procedure that we are completely prepared in what to expect. I think a medical procedure such as this one cannot possibly be faked. We shall see what happens next.
On another note, my father is from Chile and he tells me they are doing great things down there with stem cell research and treatments. This he learns from his sister who still lives there.
How exactly did you receive stem cell therapy? And please forgive me if you have posted details in your blog, feel free to let me know and I will dig deeper into your posts.
Best,
Rosie
From: George Goss
Subject: CCSVI
To: Rose
Date: Thursday, July 1, 2010, 11:04 AM
Hi Rosie,
Having a discussion with you is nice because you have so many great points. I hope you won’t mind terribly much if I bounce some of my observations and opinions off you based upon your comments. . . .
. . .
- Stem cell transplant therapy, just like all medical therapies, does have a way to go before it is finally
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accepted as Curative. However, it's just now in the final stages of FDA phase II trials with phase III trials planned. Based on an extrapolation of this schedule, I believe it's entirely possible that a stem cell transplant will become standard curative therapy for MS within ten years. At that point insurance should cover the cost of the (cure) procedure. For now, it has to be paid out-of-pocket. And unfortunately it's not an inexpensive procedure.
- Interesting that you mention embryonic stem cells and the tumultuous controversy surrounding them.
Other people also brought up this subject when I told them I was getting a stem cell transplant. But actually, with an autologous stem cell transplant the patient is only getting their own stem cells back.
The stem cells do not come from another donor or any embryos. So there's not a lot of controversy here. Interesting that to my knowledge, there is not a single disease currently curable by embryonic stem cells.
- I believe that I appropriately use the term "junk science" to describe Zamboni's original study. The
"study" was designed and executed by Zamboni so that it was impossible to fail (meaning that the results are meaningless). That is not science. And in the words of the European science establishment I also believe it was completely "unethical."
- And I'm also familiar with the discovery of Helicobacter pylori as a cause of gastric ulcers. Remarkable work done by the original investigators and my hat's off to them for their perseverance in the face of then-dogma. But even though they were going against the putative beliefs of the time, I'm not aware of anyone calling their discovery junk science. In fact, it is their following of sound scientific principles that eventually led to the acceptance of bacteria-as-a-cause of gastric ulcers. But I think Zamboni's theory and the theory resulting in the H. pylori cure is not comparable. Making Zamboni a martyr does not make CCSVI more real as a cause (or cure) of MS.
- I am also looking forward to CCSVI study results over time. Even though I think it will never result in a cure, I am interested in knowing more about CCSVI's association with co morbidity factors.
- If people with MS seek and receive CCSVI treatment, that's OK with me since it's an individual decision.
However, I think any improvement is more likely a placebo effect, than otherwise. And yes, the placebo effect is real, but it's not a cure because it's not lasting. Most people with MS will continue to degrade over time, with or without CCSVI treatment. For those that do get CCSVI treatment, that is setting a lot of people up for some serious disappointment (and waste of their money).
- So far today only a stem cell transplant (also sometimes called a bone marrow transplant) has consistently shown greater than an 80% cure rate for MS (and for several other autoimmune diseases, as well). Any placebo effect has been excluded from those studies. All the study info is public for review.
You can see some of the data on my stem cell references page: http://themscure.blogspot.com/2010/06/stem-cell-transplantation-reference.html
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- There are two major types of stem cell therapies that are vastly different from each other. The only one that will cure MS is by first harvesting stem cells from your own body and then destroying the bone marrow with high dose chemotherapy. Following this your own stem cells are then re-infused back into your body and then this result in re-growing the bone marrow and having a "reset" immune system that no longer attacks your body. This is what I did and for me it worked fantastically well. I'm definitely cured. However, the other form of stem cell therapy takes stem cells from your own body, and then without destroying the bone marrow the stem cells are re-infused back into your body. This type of
"stem cell therapy" is worthless and has no demonstrated clinical benefit at all. There are many companies all over the world offering this treatment to patients just to get money. Sad, but many desperate people go for this treatment looking for a cure, just the same reason I believe people get
CCSVI treatment. They hope it will cure them even though there is zero evidence it has any long term benefit.
- A stem cell transplant (the type I received) is a hard procedure (makes you quite sick for a week). But it's not an impossible procedure to endure. Also, it's quite expensive. So how much is a cure for MS worth? That's a personal decision for each individual.
- You can find out about my stem cell transplant procedure by reading my overview page here: http://themscure.blogspot.com/2009/11/introduction-to-voyage.html
I'm not pushing this stem cell transplant on anyone even though it is the only cure available today. If you have any questions or comments, I'm always glad to receive your e-mail.
Thanks & regards,
- George
The CCSVI mythology
Thank you for visiting my blog. If after reading this page, I hope you will have an opportunity to scroll back up here to the top and follow this link to another page that I think has valuable information: http://themscure.blogspot.com/2010/06/stem-cell-transplantation-reference.html
"I worry that, especially as the Millennium edges nearer, pseudo-science and superstition will seem
year by year more tempting, the siren song of more sonorous and attractive."
- Carl Sagan
How fitting I found this quote of Carl Sagan's to be especially relevant to the subject in this posting. And on this subject I know this posting is going to upset many people in the MS community that are looking for an easy solution to cure MS. But sometimes the truth (or in this case, the facts) hurts. This page reflects my opinion along with some rational scientific interpretation about CCSVI since this is currently
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all the rage in the MS community. If you have a sensitive disposition and are unable to listen to other points of view, please stop reading now. I don't mind if others have a different opinion. I'm not going to try to force my opinion on anyone else that does not agree with me. If you have MS, are only looking for the cheap & easy cure solution (a stem cell transplant is neither), please don't read my blog. You'd be better off going somewhere else to get your info because I like to use science as my tool for finding a cure. And as a scientist, chasing the latest "fad" cure is not something that I do.
So for those that don't know about CCSVI, it stands for "Chronic CerebroSpinal Venous Insufficiency." A term and theory invented by Dr. Paolo Zamboni (not the same guy that invented the ice scraper).
Zamboni is an Italian vascular surgeon, and as the story goes he was looking for a way to cure his wife of
MS. So he decided to fall back on his area of expertise (which has nothing to do with immunology) and look for a "vascular" cure for MS. He purportedly theorized that MS is caused by a lack of blood drainage from the cranium resulting in an excess of Iron contamination of the nervous tissue which thereby causes cellular damage. So his easy (and less expensive) solution to the problem has been to do outpatient angioplasty (or alternatively a stent insertion) of the jugular return vein from the cranial cavity and thereby lessening the Iron exposure to the nerve tissues.
Here's a description. . . . http://www.ccsvi.co.uk/
This treatment is also euphemistically called "the Liberation Procedure." But it won't liberate anyone from multiple sclerosis. The only thing it will liberate is money from your wallet for an ineffective and possibly dangerous procedure (people have died in the course of receiving this treatment).
But don't take my word for it. . . . . The top Germany NGO on MS has already issued a statement on the subject of CCSVI; "In our case, the lack of scientific Zamboni et al. study results did not present a sound scientific methodology and are therefore worthless and even ethically questionable." Ouch!
Additionally, the Multiple Sclerosis Society of Canada (MSS) was quoted to say “. . . . . at the present time there is insufficient evidence to suggest that this phenomenon is the cause of MS.” According to Dr.
Paul O'Connor, a neurologist at Toronto's St. Michael's Hospital "There is not a shred of real evidence anywhere that messing around with these veins does anything to help MS patients." The United States
National Multiple Sclerosis Society (NMSS) has not yet issued a definitive statement on CCSVI because, I believe, they don't want to risk interrupting any funds from disaffected donors. Probably a wise business move for thier own benefit.
This first report succinctly lays out the facts of the fallacy. . . .
Massive study disputes Zamboni theory of multiple sclerosis http://www.theglobeandmail.com/life/health/new-health/health-news/massive-study-disputeszamboni-theory-of-multiple-sclerosis/article2125784/
"David Hafler, professor and chair of the neurology department at the Yale School of Medicine, said it’s “shameful” so much attention and investment is being placed on an idea that is simply not true in
light of findings about the immunological roots of the disease."
Concerns about controversial MS [CCSVI] treatment (BBC) http://www.bbc.co.uk/news/health-12637191
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". . . . . seven published studies by independent researchers have failed to back up Zamboni's findings.
Some of those research teams have suggested that what he interpreted as abnormalities were in fact normal and harmless anatomical variations found in everyone."
No Link Between MS, Narrow Blood Vessels, Study Says http://www.foxnews.com/health/2011/08/09/no-link-between-ms-narrow-blood-vessels-study-says/
"A new study provides more evidence that multiple sclerosis (MS) is not caused by a blood vessel
condition [CCSVI], as some research has suggested."
"Based on those findings, Marder's group said MS patients should not undergo surgery to open up those
blood vessels."
And a recent informational article based on info from the well respected Annals of Neurology. . . .
New Studies Question 'Venous Congestion' as a Trigger for Multiple Sclerosis http://www.docguide.com/news/content.nsf/news/852576140048867C852577730065E668?OpenDocu
ment&c=&count=10&id=48DDE4A73E09A969852568880078C249
BOSTON -- August 2, 2010 -- Two new studies challenge the controversial hypothesis that venous congestion -- chronic cerebrospinal venous insufficiency (CCSVI) -- contributes to the development of multiple sclerosis (MS). This theory has resulted in many patients with MS receiving experimental endovascular angioplasty, an MS treatment unproven by clinical trials. The studies refuting the CCSVI theory with the first negative medical evidence on the subject are available today in the August issue of
Annals of Neurology. . . . .
. . . . . These 2 papers should add a note of caution for MS patients and physicians who are contemplating interventions for possible venous abnormalities based on the findings of Zamboni. . . . .
. .
. . . . . "Our results call into question the existence of CCSVI in a large proportion of patients with MS," said Dr. Doepp. "We did not find supporting evidence that cerebral venous congestion plays a
significant role in the development of MS. . . . .
. . . . . A second study by researchers at Umeå University in Sweden also concluded that CCSVI does not contribute to the development of MS. . . . . "Our study found no support for using endovascular
procedures such as angioplasty or stenting to treat MS patients," Dr. Sundström affirmed. . . . . .
MS genetic discovery casts doubt on [CCSVI] vein theory http://www.ctv.ca/CTVNews/Health/20110811/ms-gene-study-immune-system-110811/
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"It is now clear that multiple sclerosis is primarily an immunological disease. This has important implications for future treatment strategies.". . . The findings also cast doubt on the recent theory proposed by Italian vascular surgeon Dr. Paolo Zamboni that MS is related to blocked neck veins.
One study published this week in the Archives of Neurology found no significant difference in venous
abnormalities between MS patients and healthy controls.
And also the following news articles summary as reported in the health sections of both the Wall Street
Journal and the BBC. . . . .
Studies Cast Doubt on New MS [CCSVI] theory (WSJ) http://online.wsj.com/article/SB10001424052748703787904575403160155710380.html#articleTabs%3
Darticle
Here is a great article from NPR that quotes one of the biggest medical profession's participants in the whole world of study of CCSVI (having earlier collaborated closely with Dr. Zamboni). And if Dr. Robert
Zivadinov of the Buffalo Neuroimaging Analysis Center in New York says it, then this must have important meaning . . .
Doctor Challenges Cause Of MS And Treatment http://www.npr.org/2011/01/31/133247319/doctor-challenges-cause-of-ms-and-treatment
"Meanwhile in Buffalo, Zivadinov says his research on CCSVI already shows a clear picture emerging.
"CCSVI is not the cause of MS but might be a consequence or a contributing factor to progression, and I think that has to be studied," Zivadinov says."
And from a very important scientific standpoint I think this investigational result from Wayne State
University clearly indicates that it is the immune system's T-cells (and their corresponding wayward epitope repertiore) that cause the underlying MS disease progression and relapses. These medical researchers could not have possibly produced this defiinitive concrete data result if the cause of MS were CCSVI:
Researchers publish results settling multiple sclerosis debate
"This work is significant because for the first time we are able to definitively establish a cause-and-effect relationship linking the marked T cells to the development of relapses and show unambiguously that it was the same T cells that mediated relapsing cycles." http://www.physorg.com/news/2011-02-publish-results-multiple-sclerosis-debate.html
And. . . .
Discovery of new genetic risk factors for multiple sclerosis confirms that the disease is of immunological origin [not vascular]
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http://www.webmd.boots.com/news/20110812/new-genetic-clues-multiple-sclerosis
And here is a CBC news segment on the subject of CCSVI treatment people are getting that clearly indicates the procedure is nowhere near risk-free (an abysmal risk/benefit ratio since there is no reproducible demonstrated benefit to be seen here, just the chance of injury or death). . . . . . http://www.cbc.ca/news/health/story/2010/11/18/multiple-sclerosis-vein-death-costa-rica-mostic.html
Here is a brief lecture on CCSVI from Dr. Klaus Schmierer, a consultant neurologist at Barts and The
London Hospital and Queen Mary's University of London. I especially like his talk because he aptly brings in the issue of The Scientific Method in evaluating CCSVI as a (lack of) cause of MS.
CCSVI - Big Idea Little Evidence [actually, NO direct supporting evidence] http://www.youtube.com/watch?v=2DJvn2Oi04g
New Genes Confirm Immune System 'Intimately' Involved in MS
Vascular Theory Takes a Hit - On the basis of this new research, it is clear that MS is "primarily an immunological disease. This is the way to nail this disease and get on top of it," Dr. Compston said. There
is also evidence of "an interplay between genes and the environment," he noted. http://www.medscape.com/viewarticle/747957
And I found a blog website written by a highly experienced vascular surgeon (Dr. Colin Rose) that goes into far more detail regarding the myth of CCSVI:
The Zamboni Myth: Why “CCSVI” is Surreal http://medicalmyths.wordpress.com/2009/11/24/the-zamboni-myth-ccsvi-surreal/
One of my favorite passages from this site. . . . . .
There are a number of cardiac conditions, such as tricuspid insufficiency and constrictive pericarditis, in which central venous pressure and jugular pressure are markedly elevated over long periods. Never has
MS been described as a complication of these diseases.
But the MS Society of Canada has now been intimidated by desperate patients into funding a trial of the
Zamboni procedure. I will be surprised if any of these grant applications are approved by a scientific review committee. . . . . If “CCSVI” is causing brain pathology, it must do so via some mysterious, unmeasurable, un-disprovable “reflux”, not amenable to the scientific method.
Zamboni’s myth is not science; it’s a surreal artistic creation in that this process can never be reproduced by other investigators. But all this is really irrelevant anyway because such flow patterns can never damage the brain without causing an increase in cerebral capillary pressure. Any MS patient with a large enough increase in venous pressure to cause red cells to leak out of small veins would have a head that looked like a leg with severe varicose veins; his eyes and tongue would protrude and his face would be very swollen and blue. So, there is no point in even funding a trial of the “liberation
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treatment” because it is impossible to know what Zamboni actually did and the basic science says that there no point in even trying to figure out what he did. When one doesn’t even know how to reproduce a test, how can one do a clinical trial of it? No more money should be wasted on the Zamboni myth.
We will keep our readers updated on the expansion of the Zamboni myth and it’s inevitable implosion.
When it does implode, I would hope Dr. Zamboni will indemnify all patients and insurance plans who wasted money on imaging for “CCSVI” or “liberation.”
CCSVI treatment as a cure for MS is really just junk science that has yet to withstand any valid scientific scrutiny. What started me really thinking about this is the question "for people with hemotomachrosis
(a genetic abnormaility that results in EXTREMELY high Iron in the blood), why do they not experience
MS at rates greater than the normal population?" Additionally, if MS is a vascular disease then why do immunomodulators (interferon, glatiramer acetate and tysabri) have been proven to slow down the disease for several hundreds of thousands of people taking these drugs around the world who are afflicted with MS? These drugs should otherwise have no positive effect at all if the cause of MS is
"vascular" in nature. The answer is because MS is not a vascular disease and is not caused by high Iron exposure to nerve tissue (as CCSVI purports). The putative mechanism of cure for CCVSI treatment and that of hematopoietic stem cell transplantation (for now the only scientifically demonstrated cure for the majority of people that choose to receive the procedure) is completely different. And these very dissimilar treatments can't both be correct. Another particularly interesting supportive piece of evidence that MS is not vascular, but is instead an autoimmune disease is that pregnant women that also have MS that are in the third trimester of pregnancy do not experience MS relapses. This is because the human female body suppresses her own immune system so as not to reject the growing baby from her body.
The side effect being that the MS disease activity is suppressed during that same time, as well.
And in addition to all the scientific results already established in the stem cell transplant clinical trials, I now know that a stem cell transplant cured me because of my lack of clinical progression (and clinical symptomatic reversal, as well). I've taken the time to ensure it's definitive, not just a placebo effect.
A friend of mine (fellow MS'er that also has a scientific mindset) astutely made the following rational comments that add a plausible explanation for the existing CCSVI bood flow study results out of New
York. . . .
The University of Buffalo published the first U.S. study of the link between CCSVI and MS earlier this year. The patients in the study were volunteers, so it's not the ideal of a truly random sample from the general population, but it's better than Zamboni's sample. All were examined concurrently and the examiners were blinded with respect to the patient's MS status. The result: Among the MSers, 56.4% had CCSVI, 10.2% were borderline CCSVI, and 33.4% did not have CCSVI; Among the healthy controls, 22.4% had CCSVI.
Now, this is a strong correlation, but it is far, far from being cause and effect. And, the results have not been examined for other contributing factors such as lifestyle.
Let me suggest a hypothesis I find a lot more plausible than
"CCSVI causes MS"; that is, the sedentary nature of many MSers
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causes CCSVI. Think about those bulging veins you see on body builders; I bet those people don't have CCSVI. The ratio of 2 to 1 CCSVI in MSers vs. healthy controls might just be the ratio of sedentary people in the two populations.
This supports the "correlation is not cusation" concept.
There are years of work ahead in examining CCSVI and it's relation to MS. Right now, I wouldn't give a plugged nickel for the chances of CCSVI being even so much as a minor contributing factor in MS.
To continue. . . . . there has been no 'valid' clinical study of any type showing any form of lasting patient clinical benefit (other than a temporary placebo effect) for the CCSVI procedure as has been shown in several scientifically-valid clinical trials for stem cell transplantation (which has finished all FDA stage II trial patient treatments and the stage III trial is now in full swing here in the US). Zamboni's initial biased
"study" (I hate to even call it that) was performed on a small group of MS patients that had the relapsing form of MS. And because he only included people that were in the middle of a relapse episode, even if no action were taken the MS patients would have improved, regardless. In other words, by design there is no way Zamboni's flawed "study" could have failed. Zamboni erroneously attributed the improvement to his agioplasty "treatment." But it is no mystery that the patients improved because they would have improved no matter what, even if they went untreated! I'm reasonably sure that truly scientific testing results will eventually bear out the flasehood of CCSVI treatment efficacy and disprove the purported merits of CCSVI as a cause of MS.
What this really comes down to is not Dr. Zamboni, or even CCSVI itself. This really is all about the whining constituents of the MS community that are looking for an easy, cheap, fast & painless cure for thier MS. However, such a cure does not exist. MS is not a vascular disease, it's a hematologically-rooted autoimmune disease (just like Rheumatoid Arthritis or Scleroderma). So there is only one clinicallylasting beneficial treatment for MS; it is a procedure that halts the body's underlying autoreactivity that effectively stops the immune system from attacking one's own body and restoring immune selftolerance. And as of today only a hematopoietic stem cell transplant can do this.
And by the way. . . . for all you paranoid conspiracy theorists out there that think I'm against CCSVI because I'm somehow in cahoots with the drug companies. . . . WRONG!. . . like everyone else receiving a hematopoietic stem cell transplant I have been completely and 100% freed from ever having to again take any immunomodulatory drugs to treat my MS. After 15 years of use I'm now off all MS drug treatment since my stem cell transplant cure. In fact, if the conspiracy theorists were actually correct in their irrational assertion that somehow big pharma is trying to supress a cure for MS, then the pharmaceutical companies would be dead against a stem cell transplant as a cure (which I have seen absolutely no evidence of this) becuase it frees people from continued use of expensive immunomodulator drugs. Making a logical extension of this concept, it's not a conspiracy that is holding
CCSVI treatment back as a cure. It's more fundamental. . . CCSVI treatment physically does not work as a cure. Bottom line. . . Even if some people with MS do have veins with ristricted flow patters, that does not mean that it causes MS. Correlation is not causation.
Now don't get me wrong. . . . . I wish that the medical community and researchers could find a quick & easy solution to cure MS. Unfortunately such an easy solution is not here yet (and perhaps never will
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be). I thank god that I had the opportunity to choose to be cured of MS with a stem cell transplant, hard
& expensive as it was. At least I feel I worked for my cure. And that makes it all the more valuable to me.
From George Goss
Julu 4, 2010
Hi digginya,
Interesting that you simultaneously have two very concerning autoimmune maladies that are not just serious, but also both have a hematological origin in their pathology. Although I have never been afflicted with either disease, I can imagine that it may be quite serious for you. You have my empathy and compassion for what you are likely going through (and faced with) as a result of of these disorders.
However, because both of these autoimmune conditions are rooted in hematological causes (just like multiple sclerosis), both of these conditions have a greater chance-than-not of being cured (stopping of progression) by means of an autologous hemotopoietic stem cell transplant (AHSCT, same as I outline here in my blog). And although I don't know the status of your disease progression, there is a good chance that some of the damage (or physical deficit) can actually be reversed following treatment with an AHSCT. I refer you specifically to the European retrospective study from Switzerland which shows good early treatment outcomes for a range of autoimmune disorders (including scleroderma and RA) and a good reason to consider AHSCT (you may want to take a close look at Table 5 in the paper which shows pooled results of clinical outcomes that indicates very good curative results for both Scleroderma and RA): http://www.biomedcentral.com/content/pdf/ar102.pdf
Likely, if I were in your shoes I would probably seek the same stem cell transplant treatment as a cure for the condition(s). An opportunity to potentially cure both diseases at the same time with a single stem cell transplant procedure "killing two birds with one stone." The cost would be the same as I incurred in Heidelberg, Germany at 50,000 Euros plus travel & lodging costs from whichever location you are. (Treatment of unexpected complications, if it were to occur, would be in addition to this basic cost.) Yes, it's a lot of money. But it comes down to the question of "how much is a cure worth to you?" I cannot answer that question for you (or any other individual). But for me, it was well worth the money
(and time & effort) to cure my multiple sclerosis.
Please let me know if there is anything else I can answer for you.
Very best regards,
George
Additional note added July 6, 2010:
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I should mention that a stem cell transplant cure is NOT specific to any one medical treatment facility. I chose Heidelberg for my own specific reasons (listed in the blog). However, if you are looking for a less expensive place, I'm certain there are many around the world that can perform a BEAM protocol procedure for less money. If I were otherwise unable to have the procedure completed in Germany, my backup plan was to have it done in India where the procedure cost is substantially less. I had contacted the Apollo hospital network (good reputation) and they offered to do an autologous stem cell transplant procedure for me in India for a total cost of approximately USD$40,000 (see my Day +58 posting for contact info). So please don't feel obligated to receive a SCT at any one specific facility without good reason. I just reccommend Hiedelberg because the experience for me was excellent with minimized risk
(and the procedure successfully cured me of my MS).
Comments:
From: digginya
July 4, 2010
I have scleroderma and RA as a result of that. I imagine this surgery is very pricey, no?
6 month report - I'm cured!
So I'm going to say it clearly right now. . . . .
The stem cell transplant worked and
I am cured of MS!
For clarification . . . . my definition of a "cure" has always consistently been the same: "A stopping or halting of the progression of my MS disease." And indeed, my MS has been stopped in its tracks. For any six month period of time during the five years prior to the stem cell transplant, my MS condition worsened and at no time did it ever improve. This is the first time for me that my condition did NOT worsen over a six month timeframe. And in fact, I have actually had some reversal (improvement) of disability / deficit of existing symptoms which is virtually unheard of once MS enters a (secondary) progressive phase such as mine and something I have never previously experienced. I expect to continue to actually improve (existing symptom reversal) in a significant manner going forward over several years thanks solely to this stem cell transplant procedure. As of now I have much less fatigue, a little (but definitely noticeable) less weakness, my gait (ataxia / balance) has improved, the perpetual 'resting' parasthesia I had in both of my lower legs for several years has completely gone away and I'm not sensitive to heat as I was before the transplant (it's wonderful to be able to now take a hot shower after years of only being able to tolerate lukewarm water!). And this is all while I have stopped all MS medication since November, 2009 (no more Avonex, or any other MS medication for me anymore). My body's immune system has been successfully "deprogrammed" and reset and no longer attacks my own body & nerve tissue, giving my body a chance to heal (or compensate for) the damage that has already been done. For me, a worsening of my MS condition is very likely never going to happen again thanks to the treatment which I am now officially calling a "cure."
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A note about this cure. . . . . many, if not most people including myself additionally define a MS cure as " lifelong." And I suspect, expect and am confident that my stem cell transplant has resulted in a lifetime of cure for my MS (the mechanism of action of the very valid foundation science supports this conclusion). Unfortunately I can't prove this today with absolute 100% certainty because no one can predict the future with 100% accuracy, even though I consider it highly probable that this cure will last throughout the remainder of my life. The main reason I believe this cure will last a lifetime is because of the surrogate indication of loss of childhood-acquired immunity. People receiving a myeloablative stem cell transplant lose their disease immunity memory (including that acquired in childhood through illness exposure and vaccinations) which requires that people going through this procedure must be revaccinated for all the usual diseases (Polio, Tetanus, MMR, etc). This is a clear indicator that one's own body "forgets" how to mount an immune attack from memory. This also indicates that once the body's autoreactivity "forgets," it is rather unlikely that it will magically & spontaneously remember once again for no reason. This means that MS progression due to autoimmunity is no longer active, stopping the disease process. And also significant is that so far 100% of the people that have received stem cell transplantation with MS symptomatic improvement have also reported a sustained halting of their disease. . . . so far not a single person that has undergone a hematopoietic stem cell transplant has reported only a "temporary" halting of the progression of their MS (the phase I HSCT clinical trial patients have now exceeded a full decade of continuing disease remission). I have the faith and confidence that the improvement I have already seen & experienced will continue indefinitely. I would bet real money on it. It's a great confidence builder that all the people that have had this procedure in which it worked successfully have all reported indefinite duration of efficacy. I will continue to report my progress into the future.
And I know I said it a few times before, but I have to say it one more time because it is more of a blessing than I previously had ever imagined it would be. . . . . I love that I no longer have to inject interferon (standard immunomodulator drugs to treat MS don't stop the disease; they only "delay" the accumulation of physical deficit, most of which are required to be injected). Without a stem cell transplant I would have had to take medication for the rest of my life. But now that my MS disease activity has stopped I WON'T have to do it for the rest of my life. Never again. Even though I was somewhat used to jabbing needles into myself to administer the medication that I did for so many years,
I would be lying if I said that I enjoyed it. So just this one aspect of being cured of MS has substantially contributed to the improvement & enjoyment of my life (not to mention a substantial savings of money no longer spent on medication!).
Although I have always been ambulatory (but limited in my walking distance), there's no question that prior to my stem cell transplant cure I was headed in the direction of eventually being in a wheelchair.
Following the transplant I am now definitely heading in the opposite direction, distancing myself from ever being in need of a wheelchair and I am continuously increasing my walking distance. I'm happy to have the confidence that I have vanquished that monster-on-wheels for good. However, some people might take exception to the way I am defining a "cure." Some people might only accept a cure as defined by quick & substantial reversal of disease symptoms. And this is possible with some people with
(RR)MS. For me I expect a continual (albeit slow) reversal of my already-existing (SP)MS symptoms and will continue to improve (deficit reversal) over time, probably for several more years to come. The main issue is that a stem cell transplant is more effective (or more rapid) of a cure if performed early in the disease cycle as soon as possible following initial diagnosis of MS as opposed to later when there is less probability of a dramatic quick & positive impact. So here is a video for me to explain on the topic of symptom reversal:
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(The Blogger website is having problems uploading videos. So please see my video via the following
Youtube link):
http://www.youtube.com/watch?v=jFQr2eqm3Cg
And by the way. . . I'm not the only person to be cured by this procedure. Many people with MS have been cured with a hematopoietic stem cell transplant (HSCT). An interesting video of a "typical" cure case using HSCT, along with some brief commentary from Dr. Richard Burt whom pioneered the treatment here in the US. Interesting that this patient (Barry Goudy) was diagnosed with MS the same time I was. It's just too bad that I waited years after him to have a HSCT. But I'm still happy that I did the transplant procedure:
http://www.youtube.com/watch?v=Y8SAgUB5hQs&feature=player_embedded
And another (brief) video of Barry Goudy, successfully treated with hematopoietic adult stem cells for
Multiple Sclerosis testifying at a United States congessional panel:
http://www.stemcellresearch.org/testimony/video/goudy.wmv
And another video (from Brian Tilaro) that reports on his (improved) MS status at just 4 months following his stem cell transplant. I have communicated with Brian and he continues to show symptomatic improvement to this day a couple years following his transplant. He describes his current status, in his own words. . . . . "It has been nearly two years since I was released [from the hospital]. My
MS symptoms remain, but they are [only] the same symptoms I had prior to the [stem cell transplant] procedure. [The existing symptoms] have diminished gradually, but very significantly. My strength also slowly returned. I am now walking normally and can stay on my feet for hours without much pain. I no longer use a cane at all. I have not had a bad depression episode since July of 2008. Since my immune system was killed [and then reconstituted] by the procedure, I'm optimistically certain that I won't get any new relapses (No new lesions in my brain). The MRI's I have received since the procedure have shown no new or active lesions. :)" http://www.youtube.com/watch?v=eZlj4LV51A0&feature=PlayList&p=779FD1F6CD7D2184&playnext
_from=PL&playnext=1&index=5
And then in this video watch through the first patient with Lupus cured with a stem cell transplant and watch the second segment of the woman with MS that was cured with a stem cell transplant:
http://www.youtube.com/watch?v=AZ5XQA-EvVY
And a brief story a young man having had a stem cell transplant cure. As stated in the article "And today,
Edwin's symptoms of MS have completely disappeared. 'I really don't feel like I have multiple sclerosis anymore,' he said.":
http://www.cbsnews.com/stories/2009/02/10/earlyshow/main4789551.shtml?tag=mncol;lst;1
Although no one from this diverse set of people would claim a stem cell transplant is easy, you'll notice the consistent message theme of each person treated with this procedure to cure their MS shown here,
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including me, is that they have no regrets from undergoing the procedure. It is also universal that everyone discontinues all disease-modifying MS medication following the procedure because the stem cell transplant stops further progression of the disease and there is & will be no further added disability due to MS. And with knowing what they know now, no one shown here (including myself) would have done anything differently regarding this treatment. However, clearly there must be at least a few people somewhere in the world that are not happy with the procedure as a cure for MS because a stem cell transplant does not have 100% cure rate for MS. It's closer to an 85% cure rate, but still the best demonstrated cure that's out there! (Likely the people in which a stem cell transplantation failed to cure their MS had a very advanced (primary or secondary) progressive stage of the disease in which they were not ambulatory since SCT is less effective in treating this late stage & advanced progressive disease status.) So far I can only find people that are grateful they were able to receive a stem cell transplant to treat & cure their MS. If/when I do find anyone that is unhappy with their transplant beyond some period of time following the procedure (or a failure of the procedure to work on a personal level), I'll be sure to post it in a future blog page. It would be nice to know a complete and fair picture of the treatment results. But I think it's not unfair to say the overall results of a stem cell transplant are overwhelmingly on the positive side, especially for people that are still ambulatory when treated.
Stem Stem Cell "Treatments" (not Transplants)
I would like to make an important note here regarding stem cell "treatment" that many people are receiving. This is NOT the same thing as a stem cell "transplant," and is actually just another form of useless snake oil. Here is a passge from my very first posting of November, 2009 of this blog:
. . . . I should mention regarding other forms of stem cell therapy that are offered in an after-market environment. There are many companies offering stem cell therapies that collect stem cells from adipose fat tissue, bone marrow and other sources, and then do an IV infusion and/or intrathecal injections [to re-introduce these cells back into the body without the use of chemotherapy]. The theories cited for these treatments are usually valid, but from what I have learned not a single such
"stem cell procedure" of this type has shown any clinical evidence for curing MS. Probably the downside risk is small for these therapies, but the upside usually fails to materialize and can be drowned out by the marketing hype of these companies (which is why these therapies are not available in the United
States due to FDA restrictions). I feel sorry for people that get sucked into these programs that offer little clinical benefit beyond a placebo effect. And I feel especially bad for anyone seeking such a treatment in lieu of the true cure of a stem cell (bone marrow) transplant. . . . . .
Costa Rica, Panama and China have been the largest treatment locations for this clinically unproven therapy, although there are also many other (unregulated or unenforced) countries where such companies operate. Some facilities even un-necessarily venture into the ethically & morally questionable use of embryonic stem cells when adult hematopoietic stem cells are actually the preferred curative method where there exists no controversy or moral question. In fact, the
Government of Costa Rica recently came to thier senses and decided to do something about companies offering such services with undemonstrated clinical efficacy and shut down the largest stem cell treatment center (ICM / Medistem / Cell Medicine), and likely will continue to do so with others still operating in the country. I'm thinking China likely will not make any changes to the status quo so long as it brings in money for them any way possible. Even if it is unethical, as such stem cell "treatments" are.
Check out this video excerpt from 60 minutes regarding stem cell quackery around the world:
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http://www.youtube.com/watch?v=x3WqM3NvnKc&feature=related
"This isn't allowed in any serious country in the world," Health Minister Maria Luisa Avila [of the Costa
Rican Government] said in a telephone interview. . . . . .
http://www.reuters.com/article/idUSTRE6516UR20100602
But still many people with MS are desperate for a treatment and some are angry the facilities are being shut down. The following video that I found on Youtube is of an individual that went to Costa Rica and had some of this unproven mesenchymal stem cell "treatment." I salute her for being proactive and wanting to take control of her disease, but unfortunately she operated off of flawed information. It is no mystery that she is unable to report stopping of the disease or meaningful improvement beyond normal
& expected improvement following a relapse of her MS symptoms (the fact that she continues to have relapses at all is evidence that her MS is not cured). That is because she got the wrong stem cell medical protocol. If she would have received a hematopoietic stem cell "transplant" instead of a mesenchymal stem cell infusion "treatment," likely her disease would have been completely stopped and even reversed. I always keep in mind. . . . In-vitro (in the test tube) results do NOT equal in-vivo (in the patient) results. In the end the only thing that matters is clinically presented outcome. (My MS is not just stopped; it is slowly, but substantially reversing even as you read this. All without any use of MS drugs.
That is how I define "clinical outcome" of a cure.) You'll also notice in the following video that she indirectly mentions the hematopoietic stem cell 'transplant' clinical trials in the United States (HALT-MS
& MIST) focusing only on the chemo (which admittedly is a hard, but not impossible-to-endure part of the procedure) and completely ignores the fact that this is the only clinically-demonstrated procedure to cure MS today. The only comment contribution she makes for stem cell transplantation is that she uses the word "harsh" to describe the chemo (which I don't dispute), even though the chemo is a critical and necessary part of the cure. The chemo is absolutely required to reset the immune system flawed memory; otherwise there would be no cure without it! Like many people I'm still baffled as to why more people with MS don't recognize a stem cell 'transplant' for the only cure that it is for MS as opposed to the irrational belief in other un-scientific & unproven treatments. Is it just the money (cost of procedure)? Is it because they're really scared of the chemo treatment? Or perhaps something else that is more fundamental to human behavior? At this point your guess is as good as mine.
I just ask that you not be confused by all the (sometimes conflicting) terminology floating around out there regarding stem cells (as this individual clearly is). There is no substitute for the cure of a hematopoietic stem cell transplant (if the procedure does not use chemotherapy to ablate the immune system, then it's NOT a transplant). And the words from this individual receiving the wrong treatment tells me that there is still a lot of confusion out there. BTW. . . the stem cell treatment center that she went to, ICM in San Jose, Costa Rica, is the same stem cell center that has been permanently shut down by the Costa Rican Government due to lack of any proven clinical efficacy or medical usefulness:
http://www.youtube.com/watch?v=LcfIvgzyl_E&feature=related
Her own words that her "treatment" (that I am sorry) did not cure her:
http://www.youtube.com/watch?v=ZG_M1S8HQR8&feature=channel
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And now for me that I have hit the critical six months post-transplant milestone, I am now officially past the most critical recovery time. And since I never got an infection or reactivation of any dormant virus,
I'm not likely to get sick in such a manner from this point forward. Well, the odds are unlikely that I will get sick from anything specifically related to my treatment anyway. Now I will stop taking the Bactrim antibiotic and Acyclovir antviral medication.
Next stop. . . . before the end of the year I will start a re-immunization schedule for childhood diseases that I currently have no immunity (the same reason I no longer have MS).
And I would also like to mention what has become obvious to me while researching and being involved with this adventure in curing my disease. . . . . Although it works well for Multiple Sclerosis (and several other autoimmune disorders), an autologous hematopoietic stem cell transplant will not cure every disease. However, it has been shown to have similar (good-to-excellent) curative results for other hematologic-based autoimmune diseases. If I were otherwise afflicted with any of these other types of hematologic-based autoimune disorders (there are likely many more than I have listed here), I would also likely seek the same transplant procedure to cure it:
- Rheumatoid arthritis
- Scleroderma (Systemic Sclerosis)
- Inflammatory Bowel Disease (Chrohn's disease & ulcerative colitis)
- Systemic Lupus Erythematosus (SLE)
- Polymyositis
- Evans syndrome
- Hashimoto's thyroiditis
- Chronic inflammatory demyelinating polyneuropathy (CIDP)
- Graves' disease
- Autoimmune hemolytic anemia
- Autoimmune blistering diseases
- Autoimmune lymphoproliferative syndrome
- Myasthenia gravis
- Psoriatic arthritis
- Wegener's granulomatosis
- Sjögren's syndrome (Mikulicz disease, Sicca syndrome)
- Churg-Strauss syndrome
- Microscopic polyangiitis
- Relapsing polychondritis
- Pemphigus vulgaris
- Dermatomyositis / Polymyositis
- Ankylosing spondylitis
- Sickle Cell Disease can be cured with a similar HSCT procedure utilizing mixed chimerism with a partial match HLA doner
If you know someone with one of these diseases, you may want to let them know about the possibility of a hematopoietic stem cell transplant as a means to arrest the progression of the disease so they can make up their own mind.
And here's Dr. Yamashita's bio page from the Kaiser hospital website. If you are a big name Hollywood movie star that can afford to pay big bucks for your own private physician, I suggest you hire Dr.
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Yamashita. You won't be sorry: http://www.permanente.net/homepage/doctor/daleyamashita/
Together with the Germany recommendation time frame of starting re-immunizations at 6 months posttransplant, Dr. Yamashita and I also reviewed the US/Canada NIH/CDC guidelines for post BMT recommending re-vaccination beginning at 12 months:
Immunization for bone marrow transplant recipients http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2094895/
There is data on this subject because there are many people every year that receive stem cell transplants for treatment of cancer and they also lose their immune memory and require re-vaccination.
Dr. Yamashita went and did some clinical investigation on his own and then sent me the following e-mail detailing the vaccinations I should be receiving along with the recommended schedule (I personally think the three-dose Polio vaccination is the most critical since contracting Polio of which I currently have no defense has such potentially serious implications):
From: DALE TETSUO YAMASHITA MD
Sent: 8/25/10 8:10 AM
To: George J Goss
Subject: Vaccines
Hi George,
I have the information on the vaccines. From my (US) research, and info from Dr Vempaty [BMT oncologist] as well as one of our infectious disease specialists, it looks like you shouldn't do it earlier than a year post transplant. But I recall you mentioning that International recommendations are different. I have ordered [in the Kaiser Hospital injection clinic]:
Pneumococcal vaccine at 12 m
TDAP at 12m
TD at 14 m
HIB at 12m and 14 m
Polio at 12 and 14m
Hep b series at 12 and 14 m
I didn't order the 24 month vaccines (MMR, hep b, polio, TD, HIB, pneumococcal) since I cannot order that far in advance. [I will contact him when it's time for the 24 month vaccinations.] You need the pertussis only once. Thereafter, the two subsequent tetanus vaccines are without the pertussis. I think I did this right! Oh, Influenza vaccines require no order and will be starting on Oct 2. Keep your eyes and ears open.
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Single page summary of required immunizations following myeloablative HSCT [not required for a nonmyeloablative transplant procedure] (click to enlarge):
----- Message -----
From: GOSS,GEORGE J
Sent: 8/25/2010 10:29 AM
To: Office of DALE TETSUO YAMASHITA MD
Subject: RE: Vaccines
Once again, thanks very much Dr. Yamashita.
I now consider you a researcher in addition to a clinician. You have done a wonderful (and complete) job in understanding the necessary immunization requirements. I'll take your understanding as my guidance and wait until a little closer to a year for the first round (I'll probably do it at +10 or +11 months). So thanks very much for ordering the vaccines. We'll discuss again prior to the two year immunization round. But no matter what, I won't forget as the time approaches. I hope you don't mind. . . . I'm going to post your e-mail along with your picture on my next blog posting. I think there are a lot of people in the cyberworld that are interested in this info and will benefit from your info.
Thanks & regards,
George
Additional comments:
I traded some e-mail correspondence with a friend that also has MS. He forwarded my blog address to a highly experienced neurologist to see what feedback he might have. And the neurologist’s response is along the lines of exactly what I would expect. He writes. . . . .
To define a cure you will need to follow patients for up to 20 years. If MS is an autoimmune disease autologous and allogeneic bone marrow transplant (BMT) may cure the disease. My problem with this is that BMT come with a mortality of ~5% (European Registry data); i.e. 1 in 20 patients will die from the procedure. Alemtuzumab (Campath-1h) is probably as effective as BMT with a much lower mortality; I would estimate the latter to be less than 1 in 500 at present and it may be lower with improved vigilance and monitoring of complications. This is why our centre is participating in the Phase 3 Alemtuzumab trials and have not started a BMT programme.
And my reply to my friend regarding the neurologist's comments. . . . . .
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Thanks for forwarding the doctor's response message. A very predictable one at that. I have never known of any clinical neurologist anywhere in the world (except for Dr. Mark Steven Freedman at the Ottawa
Hospital Research Institute) that will support a stem cell transplant procedure for MS. Neurologists have no training or specialty in BMT procedures and don't look at the underlying valid scientific principles of the mechanism of disease cause & cure. They just want to keep treating the symptoms, without regard to the underlying cause. That's why the doctors that most support a stem cell transplant procedure for an autoimmune disease are the ones that best understand the underlying etiology, like immunologists.
And even this neurologist's comment of a 5% mortality rate (for an autologous stem cell transplant) is straight off the script page, without any value-added thought whatsoever. It used to previously be true, but no longer. Good transplant facilities have a 1% (or less) documented mortality rate for an autologous transplant for otherwise healthy people (like the Heidelberg facility I went to that has a low mortality rate). And also, when he states "(Campath-1h) [a monoclonal antibody rat protein] is probably as effective as BMT," he would know this how?!!! I'm sorry to hear such an ignorant & unsubstantiated statement from the mouth of a board-certified physician. Can anyone say "conflict of interest?" And actually, Dr. Richard Burt (whom pioneered US-based stem cell transplantation protocols to cure MS) has the opposite view and refutes such a claim that he spells out in this lecture video clearly explaining that
HSCT is the superior treatment for achieving the best clinical outcome. . .
http://www.youtube.com/watch?v=msYTOSo4jZo&feature=channel
But what I think galls me most about clinical neurologists that oppose a stem cell transplant for curing
MS is that they all seem to think that no one is actually cured unless they can prove it by dying without any new disease activity. That means no one can ever possibly be cured by their own definition, at least until they're dead. How does that help anybody?
I have always been consistent with my definition of a "cure." Just stop the disease (which most doctors call "remission"). So this is why I consider my disease "cured" (actually better than cured because my disease is reversing) and feel I am not misusing the word. I'm glad I stopped taking my treatment cues from the prevailing & common mainstream medical norms and instead juxtaposed my neurologist into the role of "helping" me. That's why I decided to take control of my own disease and get the stem cell transplant. The best thing I ever did for my health.
But anyway, it’s unfortunate that so many neurologists all over the world are so damned closed-minded.
If I listened to the prevailing advice (to not have a stem cell transplant) my life would really suck right now, headed for a wheelchair and I'd still be taking drugs to treat my MS that offer no hope of a cure. (It seems like that's the main treatment skill many neurologists have. . . . just prescribing drugs. Sad.) Since my transplant procedure I am soooo happy with my life and happy about functioning with a reduced MS
disability load. And that's worth more than money, or an MD's narrow-minded opinion.
Friday, September 10, 2010
9 month report - I'm still cured + immunizations
Yes, the stem transplant I received nine months ago still 100% qualifies as a cure for my multiple sclerosis. No equivocations here. As a foreword, I just want to post a informational news article from the
United Kingdom's National Health Service regarding hematopoietic stem cell transplantation to remind everyone that this is not snake oil but is a real MS treatment with real curative clinical results based on
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real science. (This article outlines Dr. Burt's MIST lymphoablative treatment protocol, but the Fred
Hutchinson Cancer Institute's HALT-MS myeloablative protocol (same that I received) shows essentially the same curative clinical results.):
Stem cells 'reverse' MS http://www.nhs.uk/news/2009/01January/Pages/StemcelltreatmentforMS.aspx
"The researchers conclude that 81% of patients showed a reversal of neurological disability."
My current status update. . . . . Although I still have some residual symptoms (mainly leg weakness) that had arisen prior to my stem cell transplant, I'm still cured of MS. And that means that I have had absolutely no new or further progression of my disease (actually I have had only regression of my symptoms, which I will describe in more detail). I've had no relapses. No added symptoms. No added physical disability. Absolutely none at all. So continuing from my previous 6 month update my MS disease is still "stopped," as I expect it will be for the rest of my life. And just as important, all of my already-existing symptoms continue to slowly improve (reverse). And I mean all of them. This really amazes me because such symptomatic reversal is normally never heard of in secondary progressive (SP) cases, such as mine. Every month that goes by I feel a little better and less MS-afflicted as compared with the previous month as my body repairs (or compensates for) the MS damage that has already been done prior to my transplant. The remaining physical deficit which is entirely attributable to my disease prior to the stem cell transplant continues to lessen in it's severity over time. I now have substantially less fatigue. Where I've had muscle weakness, I get stronger and have more stamina. Where I've had numbness, now I can feel again. Where I've had parasthesia, now it doesn't tingle when I'm at rest.
Where I've had some balance problem before, now I can walk without looking like I'm drunk. Where I've had vertigo, the room hasn't spun at all since my return from the treatment. Where I was afraid to go any place that might have too-warm weather or a high temperature, now I can take the heat and don't feel hot all the time. And the most important thing. . . . I can now take my three year old son to the park and play with him, something surprisingly difficult to do before my stem cell transplant.
In short, without exception, every single one of my MS-related symptoms continues to slowly improve
(reverse). And this is all while I have stopped all MS medication. After 15 years of use, I haven't taken any MS disease-modifying drugs (Avonex interferon) since November, 2009. Extrapolating from where I am right now I believe that at 2 years post-transplant it's possible I might not be able to tell from my symptoms that I had MS before being cured. Or worst case, although my symptoms are unlikely to disappear completely (I don't expect 100% reversal) it's likely they will considerably fade into the background and not have a substantial impact on my life. I'm hoping for an EDSS of 1.5, or less. I think its entirely possible, perhaps even likely.
Just a side note about functioning. . . . . I used to be an avid auto mechanic (worked my way through college this way), but for the past several years prior to the stem cell transplant I was unable to do even simple auto repair tasks because I was physically unable due to the MS. However, last month (8 months post-transplant) I was able to crawl on my back, get under my Jeep and change the transmission pan.
Not a big job but something I absolutely could not have done prior to my transplant. It's wonderful to be able to regain capability & functioning. Thanks to the stem cell transplant at least I no longer feel useless when it comes to working on our family cars. I'm not sure if I'm more impressed with my new transmission pan, or the fact that I could actually install it myself. I guess both. . . .
Summary. . . . . . . as of today I haven't felt this great in over ten years. It reminds me of my own maxim;
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"It doesn't matter where you are. It only matters where you're going." And within my horizon (although not quite there yet), I think I'm eventually going to be at the point that it will be difficult to know that I ever had MS.
Onto vaccinations which are required following myeloablative hematopoietic stem cell transplantation.
This is required because following the ablation and reconstitution of my immune system during the stem cell transplant conditioning regimen (i.e. chemotherapy) my body's antigen-reacting effector memory Bcells and memory T-cells have lost their antibody production and defense inherited memory. This means that due to the stem cell transplant my body's adaptive humoral immunity can no longer "remember" how to fight the specific childhood diseases that I was immunized against so many years ago. This is the same reason that the immune system is "reset" and no longer mounts an autoimmune attack against the myelin and nerve tissue in my body, and is why I no longer have MS. My body's immune system has
"forgotten" what & how to attack my own tissue. A wholly welcome main effect of the stem cell transplant. Getting re-immunized is such a small price to pay for the benefit I have gained.
So recently I met with my regular General Practitioner & Internist, Dr. Dale Yamashita to discuss being re-immunized. I think I mentioned in a previous posting that he is a great doctor, a great clinical practitioner and a wonderful person, to-boot. He is on my list of people that I'd loan my house keys to.
As opposed to some other doctors I've interacted with, he has been very supportive in my endeavor to seek a stem cell transplant to cure my MS (I think he understands well the sound underlying science of performing a stem cell transplant to cure MS, and other hematological-rooted autoimmune diseases).
His contribution to my overall good health cannot be overstated. He has worked closely with me well prior to my transplant procedure, and now helps me in doing what is needed to get the necessary follow-up care since my return from Germany. I consider him an important part of the reason I am cured of MS and am thankful for his active participation in helping to keep me healthy.
Thursday, October 21, 2010
10 month Report - Meeting my neurologist to confirm the cure
Sorry that I even have to waste time mentioning this but I need to get it out right up front. . . . . I understand that someone has made the absurd accusation that I have started some kind of stem cell business following my return from Germany to capitalize & profit on my now being cured of MS. I'm not sure what would motivate someone to say such a thing or even why such an idea like this came about, but I can assure you that it is 100% BS! I'm just an ordinary person with an ordinary day job that, like many other regular people had the misfortune of getting Multiple Sclerosis (diagnosed in 1995). I'm not a doctor but I am schooled in science (Physics). I did all my own research on the subject of a cure for MS for my own singular benefit and arrived at my own conclusion that hematopoietic stem cell transplantation (HSCT) is the only treatment that had a chance to stop & reverse my MS (both of which has happened. . . you can read the latest installments of my blog for the details). However, I am NOT selling any form of treatment and I have NO business or money-interest at all associated with the HSCT that I received. (To avoid even a hint of impropriety you'll notice that I don't even use advertising banners in the blog.) I only share my experience and information so that if anyone else is interested in
HSCT to cure their MS they can have the opportunity to know of the information from someone else that has already done it.
Although I do recommend the place that I had the treatment performed because I had such a good
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experience (Heidelberg University Hospital), it is not necessary to be treated only there. Anyone can go to any other proper medical facility (hospital) around the world willing to do HSCT for an autoimmune disease and have it done based upon their own research. I can't comment on any facility other than the one where I was treated because I've only done this procedure one time and I don't have any plans to repeat it. So don't think that I'm selling anything. I have nothing for you except free information (only if you want it) and my best wishes. Good luck to you.
Onto something with substance. . . . .
Yesterday I met with my neurologist (Dr. Brian Lee) for the first time since early last year (before my
HSCT). Interesting coincidence is that unknowingly both Dr. Lee and I attended the University of
California at San Diego (UCSD). As a fellow alumnus, he is a very good doctor and a very good-natured human being. I've always enjoyed meeting with him and this time is no exception. Although he did not previously outright endorse my endeavor to seek a HSCT as a treatment for my MS, I understand why.
Doing so would put Kaiser (my medical provider and his employer) on the hook for paying for the
(expensive) procedure. And that is simply not in the purview of Dr. Lee's mandated responsibilities.
Doing so would probably have gotten him fired. But other than an outright endorsement that he could not provide, he has been supportive in other ways. Including of which he and I are now working together to document (through clinical evaluations and MRI scans) the clinical result of HSCT on my MS.
So today I had an MRI so that we can use it as a baseline for future MRI's that can be compared to see if there is a measureable effect (lack of disease progression) over time. But based upon the interval of our last physical exam before my HSCT procedure (over a year ago) vs. yesterday, Dr. Lee has established that I have had "no physically-evident progression" of my MS disease over the past year (which is consistent with my own experience and virtually never heard of in SP cases like mine). As a necessarilyconservative doctor I don't expect Dr. Lee to use the word "cure" anytime soon. However, I think that once we're able to compare MRI's over time he'll probably use the medically-accepted term "remission."
Yesterday in Dr. Lee's office (click to enlarge). . . . .
And here is note from Dr. Lee confirming that my MS appears (and actually is) stopped. A remarkable accomplishment for someone that was previously SPMS with a continuously-worsening MS disease status. (click to enlarge):
I plan to next post at 1 year post-transplant just a few months from now. See you then!
Detail of my adventure with the only cure for Multiple Sclerosis. Hematopoietic Stem Cell
Transplantation (HSCT).
Wednesday, December 22, 2010
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1 year report - Continuing Cure Status
Tempus Fugit!
How time flies when you're cured of the progression of MS and can live your life without the distraction of neurologic worsening. Life's great! Perhaps not always perfect, but I am an optimist. At this same time last year I was in the Heidelberg University Hospital receiving chemotherapy to ablate & reset my immune system followed by my stem cell infusion "birthday" that marked the transition to being cured of MS disease activity. It's difficult not to think of this momentous day in my life (December 29, 2009, stem cell transplant birthday) that I can now derive so much happiness & satisfaction (click to enlarge):
So it's now 12 months post-stem cell transplantation for me and closing fast on Christmas. So I hope everyone reading these words will at least hear from me that I sincerely hope you have some wonderful
December and New Year holidays. Being in the Ackermann ward at Heidelberg University Hospital receiving chemotherapy to ablate my immune system as conditioning regimen prior to receiving my own hematopoietic stem cells back to re-boot my immune system enabled me to be successfully cured of
MS. On December 29, 2009 I was fortunate enough to get my "new & improved" immune system reinstalled in the form of my own adult hematopoietic stem cells that made this a reality. Although I have to admit as important as this event is in my life, emotionally I'm starting to forget one year later exactly what that chemo experience was like. Funny, but I no longer remember it being especially unpleasant because it is completely overshadowed by the stopping & reversing of my MS disease and associated symptoms. I'm glad I had the opportunity to document my experience in this blog so I can go back and periodically read through it to remind myself of the scientific miracle of the procedure that cured me of the progression of Multiple Sclerosis.
And now that it's been a whole year since my transplant, based upon my current condition I'm doing fantastically well on many fronts that I will explain in more detail. But before that I think back to mid-
2009 when I was researching how best to receive a hematopoietic stem cell transplant (HSCT) to treat my MS. At that time I was several years into a secondary progressive (SPMS) disease phase with only symptomatic worsening as time passed and at that time (but no longer) headed for the eventuality of being in a wheelchair. A very disconcerting time in my life that really energized me to take control of my disease. At that time all I wanted to do was to "stop" the progression of my disease and to dodge the bullet of worsening MS symptoms. I can now confidently say that I beat MS, and not the other way around.
Before I get ahead of myself, let me first explain a little about what is currently going on with me.
Virtually all myeloablative HSCT recipients such as myself lose all T- and B-lymphocytes after chemotherapy conditioning (the objective of the treatment), losing immune memory accumulated through a lifetime of exposure to infectious agents, environmental antigens and vaccines. This "loss of immune memory" phenomenon (immune system becoming "antigen naive") is the biggest part of the overall equation as to why HSCT stops the body's damaging autoreactivity to restore immune selftolerance resulting in a halting of further underlying MS disease activity & progression. So I received my first round of (re)immunizations this past November 7, 2010 [and the second round on December 28,
2010] which is required following myeloablative HSCT because the transplant makes the body "forget" the intersecting confusion of who is the enemy (diseases) and who is the self (nerve tissue), and is also why this treatment cures MS. Boy my arms were sore for two days following those vaccinations! Six (IM) shots at one time is a record for me, and will remain so until two years post-transplant (one year from
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now) when I will receive seven shots at one time. The good news is that other than the soreness in my arms, I have experienced no other side effects associated with the vaccinations. (Perhaps next time I will ask for a few of the vaccinations to be administered in my thigh muscles so as to spread around the injected vaccination serum.) But at least I've now started the process to catch up with my three-and-ahalf-yeard old son on becoming adequately immunized against dangerous communicable diseases. Here a list of the CDC/NIH-recommended post-transplant vaccination schedule that I am following (click to enlarge):
Also a note about getting sick following my immune system "reset". . . . . since losing (and then reinstalling/re-growing) my bone marrow to correct (stop, actually) the defective memory & damaging autoreactivity of my immune system, I got sick for the first time in early December. I caught a strong & nasty cold that was going around in the community in the earlier part of the month. My wife, son and many friends all got the same cold. But my being sick and reaction to having this cold was the same as any normal individual and I suffered no more than any normal person in the community. This tells me that now at one year post-transplant my immune system is primarily back to normal and I'm no longer afraid of doing any normal activity that might sicken me. That includes being around children, animals and crowds. I'm no longer afraid to shake people's hands or touch surfaces (door knobs & hand rails) exposed to the public. And once I complete my vaccinations at two years then I will definitely be back to
100% just as any other ordinary healthy citizen. Booyah!
And as you read this I'm sure it is obvious that I am quite enthusiastic about HSCT as a cure for MS. But this doesn't make it any less of a real curative treatment because its currently the ONLY curative treatment available today for MS that has & continues to be scientifically demonstrated. To state it openly, honestly and truthfully, I am still saddled with a significant portion of residual symptomatic deficit that had accumulated prior to my HSCT. With that said I also have to add that HSCT has not only met my expectation as a cure, but also exceeded my hopes of the treatment. My MS disease progression has completely stopped (with absolutely no new or further progression of my disease since my transplant) and I also have been experiencing a continuous slow & gradual reversing of my existing symptoms that had accumulated prior to my transplant. So basically, the trajectory of my health definitely continues upward that so far includes only improvement, no worsening. So here is a list of the symptoms I had at the time of my HSCT one year ago, along with a brief follow-up description of my current status.
Current post-treatment MS status following stem cell transplantation
First note: Since my transplant I have had absolutely no progression of any symptoms of any type from
MS. So there has been absolutely no worsening. My personal definition of a "cure." And this is all while I have stopped taking all drugs to treat my MS. After 15 years of use, the last time I had taken the interferon immunomodulator Avonex was November, 2009 (to allow a short washout period before my transplant).
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However, exactly as expected I still have some residual deficit for some of my symptoms that had accumulated for the several years prior to my transplant. Here is a list of my current clinical symptomatic descriptions & status:
 Sensitivity to heat - Completely resolved - This was one of my early symptoms that completely improved and disappeared. For years I could not stand the heat and I never felt cold, even in near-freezing weather. Prior to my transplant I could only tolerate lukewarm showers. Since my return from Germany I now love taking hot showers. And just like normal people without MS, on a cold day I feel cold. (I now wear warm jackets that I haven't worn in years.) I also am no longer afraid to venture outside with physical activity on a warm summer day. Now I can handle the heat and I now respond to temperature variations like I did before being diagnosed with MS in

1995.
 Bi-lateral leg parasthesia - Completely resolved while at rest - This was also one of my first symptoms to disappear. For ten years prior to my transplant my lower legs never stopped tingling from the parasthesia. This used to be a 24/7 effect no matter where I was or what I was doing. However, now I no longer feel it under normal resting circumstances. Currently sometimes I do get some lower leg parasthesia following an arduous and / or physically
 demanding & stressful trek but resolves soon after a short rest.
 Vertigo - Completely resolved - Although not a frequent occurrence, at random times I would experience the room "spinning" (previously would usually happen at least once a week, and occasionally more often when I tilted my head far backwards). This has not happened at all, not
 even a single occurrence since returning from Germany following my transplant.
 Lhermitte's sign (and ocular "flashes" due to eye movement) - Completely resolved - Although it did not happen often, I did occasionally experience this phenomenon. It hasn't happened at all
 since my transplant and return from Germany.
 Resting fatigue - Completely resolved - I know this symptomatic description sounds like an oxymoron. How can one feel fatigue while resting? And that is part of the insidious nature of
MS. Often while just sitting and doing nothing but watching TV while sitting on the couch my body would feel exhausted like I just finished a ten mile uphill run. I hated this phenomenon because I could do nothing to escape the effect or do anything to not feel physically fatigued.
But following the transplant procedure I no longer experience this type of fatigue onset. I still get fatigued when doing physically stressful things such as a very long walk, but never does it occur when I have done nothing stressful to provoke this unwarranted effect. A major
 improvement to the enjoyment of my daily life.
 General fatigue - Substantially improved - My general fatigue level (especially while doing activities with physical exertion) is substantially reduced & improved. I don't know how to quantify this improvement, so I just have to provide a qualitative description. I simply don't tire and feel fatigued as much as compared with the time prior to the transplant. Another
 improvement that allows me better enjoyment of my life on a daily basis.
 Ataxia / balance - "Mostly" resolved - At least now I can walk without looking like I'm drunk all the time, which was a problem before the transplant. I estimate that to date these associated symptoms have improved approximately 70-80%.
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
 Hand sensory deficit & weakness - better than 75% improvement - I'm right-handed and for about three years before the transplant the weakness in my hand(s) prevented legible writing and so I never communicated by the printed word except by using a computer keyboard. Now I can write again with pen & paper. It's nice to personally write my greeting card messages this
 year.
 Foot sensory (feeling) deficit - Mostly still with me - My feet have been about 75-80% numb for a long time. This prevents me from balancing on one foot. Currently the numbness feeling is very slowly improving. Not fast reversal, but I can definitely notice the slight improvement. I'll report on this again over a longer period of time. I suspect the slow improvement will continue
 for several years.
 Leg weakness - This is still my main symptomatic complaint that makes up the bulk of my evident MS symptoms. Although my leg weakness (especially after longer walks or physical exertion) has gotten better following my transplant, I have noticed the slowest improvement in this area of deficit. The good news is that I can walk further and stand for a longer time than before treatment without stopping & sitting to rest. So there has been improvement but it is to a much lesser degree than all of my other pre-existing symptoms. Again, I expect to see continued very gradual symptomatic deficit improvement over the next several years. I will
 report again as things change (or not) over time.
 [Someone else told me that probably the reason these last two symptoms are the slowest to improve is because the nerves to these areas (legs + feet) have to travel the entire length of the spinal column and have been subject to the maximal MS damage over this extended length and hence will take a longer time for the body to repair/compensate for the existing damage. I don't
 know if this is actually correct but it seems to make plausible sense to me.]
 EDSS score - 1 point improvement (so far) - Immediately prior to my HSCT I was at an EDSS of
3.5. Now one year post transplant I am an EDSS of 2.5. So I have now fallen into the category which neurologists consider "significant improvement" of my disease status (an EDSS improvement of >1.0). This still amazes me because people with SPMS (was me) virtually never see any improvement at all, EVER! Furthermore, the HSCT studies to date indicate that symptomatic improvement following HSCT continues for several years following the transplant.
I'm now within striking distance of achieving my goal of being EDSS of 1.5 (or better) within the next couple of years. No guarantees. But if I were a betting man I'd say that it is likely. Here is a short video of Dr. Richard Burt explaining this phenomenon: http://www.youtube.com/watch?v=msYTOSo4jZo&feature=channel
Also an important note regarding permanent side effects of this chemo conditioning regimen specific to my treatment which is a BEAM protocol (this will not necessarily apply to all stem cell transplantation conditioning regimens, but likely does for myeloablative protocols). . .
This treatment is likely to cause irreversible sterility in most individuals. So if someone wants to have a child following the treatment then they will need to plan ahead. Expecting this I planned ahead and banked my sperm for the future possibility that my wife and I will have another child. This is obviously an easier problem for a man to overcome. For a woman wishing to become pregnant following
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myeloablative HSCT would almost certainly require an IVF procedure using her own banked eggs, her own preserved embryos or a donor egg. The good news is that although becoming pregnant is more of a hurdle for a woman following HSCT, being pregnant is not. Following HSCT there shouldn't be any added difficulty with having a normal pregnancy and bring a normal baby to term.
For women it is possible (although not definite) that they will experience amenorrhea which may, or may not be permanent. The risk of early menopause is greater with older female patients receiving the
HSCT procedure. Just a possibility to keep in mind.
I did experience a single unexpected (and uncommon) side effect from the chemo exposure that may be permanent for me. It appears that my leydig (testosterone-producing) cells were severely affected by the BEAM chemo regimen and my body lost most of it's ability to produce testosterone. However, this turned out to not be a big problem to overcome since I can easily use a transdermal testosterone skin patch to bring my body's testosterone levels back up into the normal range. This treatment doesn't bother me at all and I still consider it a more-than-equitable trade off for curing my MS. I much prefer wearing a skin patch compared to self injecting interferon MS medication that is no longer required. I'm satisfied & happy with this trade-off.
So to summarize. . . . other people also have been cured of MS via HSCT. And amazingly this MS cure flies in the face of the statements coming from many learned-people that "there is no cure for MS."
Wrong! There is a cure for MS. Only one as of today, and it's called "Hematopoietic Stem Cell
Transplantation" (HSCT) that is based upon solid curative science. You can check out my references page if you want to understand more about the well-established curative & clinical science behind HSCT for
MS: http://themscure.blogspot.com/2010/06/stem-cell-transplantation-reference.html
I'd also like to mention that I am fortunate to have met several other people that have also received the
(same protocol, different treatment facility) transplant regimen that I received. One of these individuals is the very good-natured Dave Bexfield that founded "ActiveMSer's" website:
ActiveMSer's http://www.activemsers.org/
Since completing his HSCT, Dave has put together a nicely-made video that summarizes his experience with both entering the HALT-MS clinical trial, and his treatment experience: http://www.youtube.com/watch?v=6VTu--htcMI
Here is another person (Chris) that just completed HSCT for treatment of his MS in Ottawa, Canada. We don't actually yet know the final end-story (I'm confident he will be cured), but you can follow along with his story (primarily narrated by his wonderful & devoted wife, Erin). . . .
My End to MS - Chris' journey to end his multiple sclerosis by undergoing a hematopoietic stem cell
transplantation at the Ottawa General Hosptial. . . . .
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http://my-end-to-ms.blogspot.com/
And here is an intelligent, strong-willed woman that also came to the conclusion that HSCT was likely the only medical treatment that had a chance to stop the progression of her of MS, and received treatment with Dr. Burt at NWU. Not only can you read all about her transplantation experience, but also if you ever wanted an opportunity to feel good about yourself by helping another person, this may be it. . . .
Lisa's Hope http://www.lisashope.com/index.html
So together with dozens of other people that have undergone an HSCT procedure for treatment of their
MS, I am living proof that MS can be cured. I will concede to you that I have my own definition & nomenclature of a cure that you may not agree with. . . . A cure to me for my MS has always been the same; A "stopping" or "halting" of MS disease progression. So by my own definition I am cured. But that isn't the end of the story regarding my disease status. I have additionally been experiencing a slow, but definite & substantial "reversal" (improvement) of all my existing MS symptoms that had accumulated over time prior to my undergoing HSCT. I will admit & fully disclose to you. . . . . this process of symptomatic reversal is occurring very slowly for me. However, keep in mind that I had Secondary
Progressive MS (SPMS) in which the underlying nerve damage mechanism is different as compared to those MS patients that have the relapsing form of MS (RRMS). It turns out that people with early phase
RRMS disease status that undergo HSCT to cure their MS usually experience not only essentially 100% halting of their disease progression, but also have better than an 80% chance of experiencing substantial
& perhaps quick reversing/improvement of existing physical deficit. So for me personally I have been experiencing a very slow, but welcome modest improvement even though it is not likely to ever be as good as someone treated with HSCT while still RRMS. I describe the nature of symptomatic
"improvement" in a Youtube video I listed on my six month blog posting when it became apparent to me that I had experienced stopping+reversal of my MS symptoms, along with a description of the mechanistic actions of HSCT on MS symptoms: http://www.youtube.com/watch?v=jFQr2eqm3Cg
So although likely that the progression of MS disease activity will be stopped in all forms of MS (both relapsing and progressive), I have created a graphical slide to categorize the expected relative probability of symptomatic improvement (damage reversal) following hematopoietic stem cell transplantation vs. disease status at time of treatment (click to enlarge):
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As a wrap-up of this posting I mention for scientific reference and curiosity. . . . . In my 6 month post I said that I would try to find an example of a hematopoietic stem cell transplant procedure that did NOT work on a specific individual to cure their MS. I still have not been able to find an individual that fits such criteria. (So far, I have only found successes with HSCT to cure MS.) But I did find some info toward that direction. . . . a brief well-written blog of Craig Garrison that had the procedure performed in 2001 that may be of interest. (My hat's off to him for sharing this valuable information from way back at the beginning of MS curative history as-performed in the United States under clinical trial.) He was one of the very first set of US-based phase I clinical trial patients to undergo an initial "prototype" stem cell transplantation procedure (which has since been refined & updated (changed-protocol) to make it safer without losing curative efficacy). And although he indicates overall he is satisfied with having undergone the procedure, there is no doubt (by reading his blog) that he had a very rough time with the experience
(both during, and especially after the treatment) with unpleasant and troubling treatment complications
(CMV infection and treatable skin cancer lesion, both of which he was able to eventually overcome). But in retrospect, knowing now what the researches did not know back then, its understood why this likely happened to Craig and how it is being better-dealt with now with the evolved protocol. A couple important reasons why he had such a difficult experience. (I had the good fortune to communicate with
Craig via e-mail and he indicated that my understanding here is consistent with his thinking). . . .
Number #1 is that Craig's bone marrow ablative treatment protocol included total body irradiation (TBI) that is sometimes used with some forms of aggressive-cancer patients receiving a stem cell (bone marrow) transplant. I can only guess that the original researchers at the time wanted to be absolutely certain that they fully and completely killed the immune system with little remaining doubt, even though TBI is rather damaging to the body's other tissues where destruction is not desired. It is now known (starting in the phase II MS stem cell transplant studies) that a chemical-only ablation regimen works just as well as an MS cure as compared to a protocol that includes TBI, with significantly less risk of unwanted complications experienced from unecessary ionizing radiation exposure. I "think" his most serious complications that Craig experienced were directly related to the TBI, which is now known to not be required while still effecting a cure for MS.
Number #2 issue is that Craig had SPMS with an advanced EDSS score of 6.0, meaning that he was on the immediate threshold of being unable to walk (he used a double-cane to move around). Nearly all the early phase I study participants had a significantly advanced stage of MS (most with EDSS in the range of
6.0 to 8.0) and were not ambulatory, which is now known to be less curable (or reversible) as compared to ealy RRMS disease status with a lower EDSS. That is, although counterintuitive, people with more advanced MS disease status don't fair as well as people that receive a stem cell transplant cure while treated earlier in the MS disease cycle in which they are still RRMS and/or ambulatory. So this means late stage progressive disease + high EDSS (low ambulation capability) = poorer chance to reverse disease disability, although it does look like the disease progression can still be "stopped" in such advanced cases. But by that time much of the neurologic damage is already done and it may not reverse much, if at all.
For me, although I was SPMS I am fortunate to have had a relatively lower EDSS score (3.5). So in my case being fully ambulatory portended a better chance of cure and disease reversal, both of which I have realized. So for me, my status has resulted in better-than-cure with continuing reversal of disability. This clearly indicates that although perhaps not obvious, anyone else considering this treatment would be wise to complete stem cell transplantation treatment earlier, rather than later in their disease lifecycle. Doing so significantly ups the probability of curative success and more complete reversal of disease symptoms.
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Craig's (rather dated, but still historically-relevant) 2001 stem cell transplant blog: http://www.mult-sclerosis.org/craigsstory.html
In Craig's own words back in 2003 that indicates at least his disease completely stopped progressing. . .
The 18-month check-up went well. The MRI showed my brain was stable., i.e., no new lesions, no active lesions. The timed physical trials showed that my legs improved again, and I can now walk twice as fast as when I went into the trial, but my hands were unchanged from six months ago. I had sensed that my rate of improvement was slowing, but it is still improvement. The more subjective trials like the finger to nose to finger test seemed to show some improvement. My guess is that means my brain has a better sense of where the unseen parts of me are than it did six months ago. However, I will say that when I wake up in the middle of the night and need to scratch an itch on my nose, it is still trial and error before my finger finds my nose.
And thanks to both David Ferris and Dave Bexfield for bringing my attention to Craig Garrison's recent
(Jan, 2010 & Apr, 2010) updates to know how he is doing nearly ten years following his HSCT treatment in which he has basically remained MS-progression-free for this past decade, and continues to be. A very good & positive sign for those wishing to also pursue HSCT to cure their MS. But I don't want to steal
Craig's thunder. Here he briefly summarizes in his own words. . . . .
. . . . . My [HSCT treatment] results weren't so dramatic, but they were definitely positive. Most who go through this procedure simply go into remission. I've worked hard for [the past] eight years, and have gone from occasionally needing two canes to occasionally needing no cane for short periods.
The procedure is getting a little more press now because the phase II trials are starting to report [very positive] results. . . . . .
Craig
I applaud you Craig. Thanks for being the true pioneer to help out the rest of us! The only thing that I can claim fame for myself is that I believe I am the first person in the United States to receive HSCT for treatment of my MS outside of a clinical trial. It doesn't bother me that I'm sure this distinction will go unnoticed in the history books. But Craig on the other hand. . . . you truly braved the (then) unknown during your transplant in the quest for a better future. Time to hit the lecture circuit and make some moola from the speaking tour! :-)
And if you'd like to read greater detail as-reported by Craig in April, 2010. . . http://www.freaksearch.com/en/thread/1830528/recovery_from_autologous_stem_cell_transplant_xxv_prepping_for_a mpyra
So sorry to keep repeating the same thing I've said before, but this is a critical point. . . . . Looking at the global studies to date and building on the experience and knowledge developed so far, it looks like people treated earlier in the MS disease cycle that also have a fully ambulatory EDSS experience essentially 100% halting of their MS disease activity (my personal definition of a cure). And then on top
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53 | P a g e of that, better than 80% of the same group of people actually experience significant reversal of their MSrelated disability and symptoms. In effect, not a single person treated during this earlier (ambulatory)
MS stage appears to experience symptomatic worsening following hematopoietic stem cell transplantation, but instead have an excellent chance of reversing their existing disease symptoms (if you consider greater than >80% an excellent chance, which I do.) This small population study on early
MS-disease cycle patients by Dr Richard Burt at Northwestern University certainly appears to confirm this for relapsing patients. . . .
Scientists Reverse Early MS With Patients' Own Stem Cells http://www.medicalnewstoday.com/articles/137238.php
After an average follow-up of three years after receiving their transplants (which took place between
January 2003 and February 2005), 17 patients (81 per cent) improved by at least one point on a [EDSS]
disability scale. And for all [100%] patients, the disease had stopped progressing.
Also note that no study patients in this clinical trial (or any other HSCT phase II clinical trial for MS) died as a result of this treatment. These safety data together with the curative results indicate that it is most likely to be repeated in the phase III clinical trial that is already in progress. And as I had mentioned previously, I also firmly think that this treatment will become standard FDA-approved curative therapy in the USA no later than sometime between 2020 and 2025. Sorry to say that until then you'll have to pay for it out of your own pocket at a facility willing to perform the procedure (I have found none in the US or Canada outside of a clinical trial). But thank goodness at least it is available as a treatment option today overseas! Once it is approved by the FDA, insurance will cover the cost of the procedure at that time and it will also be available in the United States.
Just FYI. . . . For future postings I plan on updates at six month intervals because at this point I think 3 month intervals is now too frequent. So expect to see my next status update at 18 months posttransplant. If convenient for me I hope to provide additional evidence on video showing my symptomatic improvement.
Last note just for the record. . . . the cure for MS is here now! Don't let anyone convince you otherwise.

Sunday, July 3, 2011
18 month report - Sustained Cure Status : Future regained!
I know that a lot of people with MS will recognize this box of medication pictured here that I had forgotten about and found lingering in the bottom of my refrigerator as we were cleaning it out this past week (click to enlarge):
I post this picture mainly for my own entertainment & reminder of my previous life prior to my transplantation that completely stopped my MS disease activity & progression. I had taken Avonex interferon for 15 years prior to my HSCT procedure. Avonex, just like all the CRAB drugs only "slows" or
"delays" the progression of MS symptomatic deficit accumulation by average of 30%, but does not stop the disease. As of today only HSCT can accomplish this. You'll notice on the prescription label that this box was issued in September of 2009, a few months prior to my transplantation. I used two of the four dose packs from this particular box and the remaining two dose packs have been sitting there in the bottom of my refrigerator for the past year-and-a-half. Ever since my HSCT procedure I have never again taken any MS drugs of any kind because they are no longer necessary or helpful (which is also the case with virtually all HSCT recipients). My underlying MS disease activity is gone. The curative effect of HSCT has returned to me my future because I no longer live with the uncertainty (and fear) of what might happen due to MS and the disease progression is no longer a part of my life. And have I mentioned how happy I am that after 15 years of chronic injections I no longer have to use a syringe since 2009 following my HSCT? Yeah, I think I mentioned that earlier. I don't mind to say it again though. This has contributed so much to the enjoyment of my daily life! (I get my own pleasure from acknowledging it out loud.)
So this is where you will come to understand my realistic reporting of the results of Hematopoietic Stem
Cell Transplantation (HSCT) relative to my own MS-related disability. I'm not going to be overly-rosy or provide any exaggeration in the reporting of my current status. Here are a few basic facts as of today, a year-and-a-half since my transplant:
 My underlying MS disease activity is (still) 100% stopped. No further progression, relapses or advancing MS activity whatsoever. This includes no new lesion activity on MRI scan. HSCT has unequivocally and unquestionably accomplished my primary goal of halting the underlying MS disease process and has restored immune self-tolerance to my body. An especially amazing accomplishment considering that I was in a (secondary) progressive phase of the disease in which it is virtually unheard of to improve from such a state. I currently feel better than I've felt in many years.
 I no longer take any form of medication or treatment of any kind for Multiple Sclerosis. As of today I just take a multi-vitamin and keep an eye on my cholesterol level. It is truly amazing how much the enjoyment of my life has improved by NOT ever again having to inject interferon
(Avonex) medication! I calculate that I self-injected IM (long needle!) interferon more than 750 times over 15 years. Although used to the injections, I would be lying if I said I enjoyed it. So happy that I no longer have to do this.
 I've already had my first two of three rounds of vaccinations required for those receiving a myeloablative HSCT. I will have my final round of vaccination injections at 2 years post-
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transplant that includes the all-important MMR (you can read the 1 year update posting to understand more on this topic)
 Other than curing my MS, the only other probable permanent side effects I have experienced from the chemo conditioning regimen are 1) Sterility (before my treatment I expected this to happen and I banked my sperm for the possibility that my wife and I will have another child), and 2) Something that I did not expect is that my body lost most ability to produce testosterone
(leydig cell damage from the chemo) that I have been able to easily overcome by using a daily testosterone trans-dermal skin patch (Androderm) to restore testosterone levels to a normal range. This has proven to be painless, near-effortless and not-at-all inconvenient. It just costs money, but still a heck of a lot cheaper than the interferon I no longer take.
 All of my pre-existing MS symptoms have improved (reversed), and continue to do so slowly over time. However, the rate of improvement now appears to be slowing as compared to the first year-to-eighteen month period directly following my transplantation. But in the famous words if Kirk Garrison, improvement is still improvement and this trend follows the "expected" asymptotic curve of diminishing returns over time. That basically means that I have experienced a tremendous amount of improvement in the first 12-18 months following my HSCT and now likely I will continue to see additional improvement over time, albeit more gradually from this point forward. The general shape of this symptomatic improvement curve shown here is fairly representative of what can often be expected for MS patients following HSCT (and is what I am experiencing). However I'm sure the slope & amplitude of this curve will somewhat differ for each individual based upon several factors that includes the phase of disease activity (RR, SP, PP) and relative total disability at time of treatment. (click to enlarge):
 Of course the curve shown above is just a general theoretically predictive average curve which may somewhat differ for each individual (although the general properties of the asymptote should be consistent). Actual patient outcomes rarely follow the exact smooth-shape predictions as shown, so I have created another similar graph that more accurately reflects the reality of my own absolute symptomatic improvement (expressed as EDSS) over time. You can see that there is some level of normal daily fluctuation in the status of the symptoms that remain (mainly related to my leg strength), in which some days are a little better than others.
But the adage that holds true. . . . "The worst symptomatic day today is better than the best symptomatic day just prior to my transplant." I think this graph accurately reflects this. (click to enlarge):
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Here is Dr. Richard Burt explaining this general phenomenon: http://www.youtube.com/watch?v=msYTOSo4jZo&feature=channel
To provide a seamless continuation reporting of my post-transplantation health status, I just copied the following list from my one year report posting and have added my current 18 month posttransplantation status update:
Sensitivity to heat
 12 month report - Completely resolved - This was one of my early symptoms that completely improved and disappeared. For years I could not stand the heat and I never felt cold, even in near-freezing weather. Prior to my transplant I could only tolerate lukewarm showers. Since my return from Germany I now love taking hot showers. And just like normal people without MS, on a cold day I feel cold. (I now wear warm jackets that I haven't worn in years.) I also am no longer afraid to venture outside with physical activity on a warm summer day. Now I can handle the heat and I now respond to temperature variations like I did before being diagnosed with MS in
1995.
 18 month update - OK, for this specific symptom I can add some descriptive modification. Now that we are entering some warmer summer weather here in July I now have come to better realize (for me) there is a difference between "feeling hot" and "being hot." I no longer "feel" hot in an abnormal way. Prior to my HSCT I felt hot continuously, all the time. Even when it was near-freezing temperatures outside I always wore short-sleeve shirts when everyone else were wearing sweaters & jackets. People sometimes commented to me that it seemed strange to see me sweating on a cool day. Things are different now as I can explain with a simple example that is now characteristic of my current heat-tolerance status. A few weeks ago I went to the beach with my wife and son just north of San Francisco (where it is usually never hot). The outside temperature was approximately 65F (18C) with average humidity. I laid down on a towel while my son ran around and played in the sand. Take a closer look at this photo my wife snapped of
 me (click to enlarge):
My wife was shocked and told me that in the seven years we've been married she has NEVER seen me wear a sweater AND a Jacket (I would have been sweating in the same situation prior to my HSCT). I guess this serves as confirmation that the way I "feel" in response to temperature is much like any other normal person would respond (my wife was also wearing a jacket). Here comes the important additional info. . . . However, when I actually am in a hot temperature environment (such as summer in the sun) it still adds a "little" (but noticeable) to the fatigue I feel in my legs (only). But I do have to admit that this specific "fatigue-adding" effect is nowhere
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near as severe as compared to prior to my transplant. So things are improved. Before it was a foregone conclusion that all of my symptoms would worsen substantially when I became heated. Now only my legs (no other symptoms) just feel a "little" more fatigue when hot, but not as badly as compared to before my HSCT.
Bi-lateral leg parasthesia
 12 month report - Completely resolved while at rest - This was also one of my first symptoms to disappear. For ten years prior to my transplant my lower legs never stopped tingling from the parasthesia. This used to be a 24/7 effect no matter where I was or what I was doing. However, now I no longer feel it under normal resting circumstances. Currently sometimes I do get some lower leg parasthesia following an arduous and / or physically demanding & stressful trek but resolves soon after a short rest.
 18 month update - Actually it is better now. I don't experience parasthesia at all, ever. Even when stressed from an extended walk. The effect is 100% resolved. Nice.
Vertigo
 12 month report - Completely resolved - Although not a frequent occurrence, at random times I would experience the room "spinning" (previously would usually happen at least once a week, and occasionally more often when I tilted my head far backwards). This has not happened at all, not even a single occurrence since returning from Germany following my transplant.
 18 month report - Unchanged. 100% resolved.
Lhermitte's sign (and ocular "flashes" due to eye movement)
 12 month report - Completely resolved - Although it did not happen often, I did occasionally experience this phenomenon. It hasn't happened at all since my transplant and return from
Germany.
 18 month report - Unchanged. 100% resolved.
Resting fatigue
 12 month report - Completely resolved - I know this symptomatic description sounds like an oxymoron. How can one feel fatigue while resting? And that is part of the insidious nature of
MS. Often while just sitting and doing nothing but watching TV while sitting on the couch my body would feel exhausted like I just finished a ten mile uphill run. I hated this phenomenon because I could do nothing to escape the effect or do anything to not feel physically fatigued.
But following the transplant procedure I no longer experience this type of fatigue onset. I still get fatigued when doing physically stressful things such as a very long walk, but never does it occur when I have done nothing stressful to provoke this unwarranted effect. A major improvement to the enjoyment of my daily life.
 18 month report - Unchanged. 100% resolved.
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General fatigue
 12 month report - Substantially improved - My general fatigue level (especially while doing activities with physical exertion) is substantially reduced & improved. I don't know how to quantify this improvement, so I just have to provide a qualitative description. I simply don't tire and feel fatigued as much as compared with the time prior to the transplant. Another improvement that allows me better enjoyment of my life on a daily basis.
 18 month report - Improved further, now better than 12 month status. Again, I don't know how to quantify this so all I can do is to provide a qualitative description. It's just better.
Ataxia / balance
 12 month report - "Mostly" resolved - At least now I can walk without looking like I'm drunk all the time, which was a problem before the transplant. I estimate that to date these associated symptoms have improved approximately 70-80%.
 18 month report - Further improvement. I estimate that this symptom is now 90% - 95% resolved. I suspect after another year, or two it will be 100% resolved since this continues to slowly improve.
Hand sensory deficit & weakness
 12 month report - better than 75% improvement - I'm right-handed and for about three years before the transplant the weakness & (lack of) feeling in my hand(s) (especially my right hand) prevented legible writing and so I never communicated by the printed word except by using a computer keyboard. Now I can write again with pen & paper. It's nice to personally write my greeting card messages this year, although I still find that using a computer keyboard is easier
(who doesn't?).
 18 month report - Further improvement. My hand strength & feeling is now recovered approximately 90% from worst-baseline prior to HSCT. Not completely recovered but now I can fasten / unfasten all the buttons on my shirt by myself. That was surprisingly difficult before my transplantation and I often previously asked my wife to fasten the smallest buttons (such as the cuffs) that I had the most trouble with. Don't have to do that anymore. I can take care of those myself now.
Foot sensory (feeling) deficit
 12 month report - Mostly still with me - My feet have been about 75-80% numb for a long time.
This prevents me from balancing on one foot. Currently the numbness feeling is very slowly improving. Not fast reversal, but I can definitely notice the slight improvement. I'll report on this again over a longer period of time. I suspect the slow improvement will continue for several years.
 18 month report - Improved further even though still evident. It still is not quick reversal, but now I can balance on one foot "just" long enough to get my pants on while standing up.
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Although I still am unable to stand indefinitely on one foot, I'm happy to see this modest improvement.
Leg weakness
 12 month report - This is still my main symptomatic complaint that makes up the bulk of my evident MS symptoms. Although my leg weakness (especially after longer walks or physical exertion) has gotten better following my transplant, I have noticed the slowest improvement in this area of deficit. The good news is that I can walk further and stand for a longer time than before treatment without stopping & sitting to rest. So there has been improvement but it is to a much lesser degree than all of my other pre-existing symptoms. Again, I expect to see continued very gradual symptomatic deficit improvement over the next several years. I will report again as things change (or not) over time.
 18 month report - Still my only symptomatic complaint of any consequence (this is the only preexisting symptom that matters to me anymore . . . . the others are now inconsequential). My leg strength and ability to walk long distances is still limited, but I have still seen improvement. Prior to transplantation I was limited to several hundred meters walking distance until I needed to stop and rest. Now I can walk nearly two full kilometers (perhaps more?) before needing to stop and rest. That's better than a 500% improvement and has provided me the most significant benefit to my daily life. I hope to (and probably will) see further gradual improvement over the next couple of years. I still can't run a mile like I dreamed about while I was in the hospital, but it is still within the realm of possibility if this slow improvement continues for an extended period of time. But even if I am unable to do so, I'm quite happy with what I have accomplished so far.
Additional comment
 [12 month added comment - Someone else told me that probably the reason these last two symptoms are the slowest to improve is because the nerves to these areas (legs + feet) have to travel the entire length of the spinal column and have been subject to the maximal MS damage over this extended length and hence will take a longer time for the body to repair/compensate for the existing damage. I don't know if this is actually correct but it seems to make plausible sense to me.]
 [18 month added comment - the previous comment appears to fit the facts. I think maybe it is correct. Or at least I'm buying into the concept. (Thanks Erin!)]
EDSS score
 12 month report - 1 point improvement (so far) - Immediately prior to my HSCT I was at an EDSS of 3.5. Now one year post transplant I am an EDSS of 2.5. So I have now fallen into the category which neurologists consider "significant improvement" of my disease status (an EDSS improvement of >1.0).
This still amazes me because people with SPMS (was me) virtually never see any improvement at all, EVER! Furthermore, the HSCT studies to date indicate that symptomatic improvement following HSCT continues for several years following the transplant.
I'm now within striking distance of achieving my goal of being EDSS of 1.5 (or better) within the
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next couple of years. No guarantees. But if I were a betting man I'd say that it is entirely possible.
 18 month report - 1.5 points improvement (so far). I'm now at an EDSS of 2.0. As of today that's mathematically a 40% improvement as compared my pre-existing (pre-HSCT) status of 3.5. The rate of improvement has now noticeably slowed (as expected), but even additional slight improvement over time could eventually get me to my original goal of EDSS 1.5. If that happens in another couple, or several years, I'm golden and grateful! But no need to look a gift-horse in the mouth. I'm already satisfied & appreciative with what I have accomplished so far.
The future I lost 16 years ago when diagnosed with MS is now back. Because the HSCT procedure has completely stopped my underlying MS disease activity & progression I have regained enough certainty of the future that I can now better plan my life with my family!
Tuesday, September 6, 2011
The Next Miracle
I'm still happy to be totally & completely free of MS disease progression. When not thinking about the scientific validity of HSCT to cure MS (especially considering that currently there is nothing other than
HSCT that can cure MS), it is easy to consider it a medical miracle.
But of course there are a few downsides (I prefer to call them trade-offs) to stem cell transplantation to cure MS. One of them is that for myeloablative chemo conditioning protocols (same as I received), permanent sterility is generally the rule. But I knew this going into my treatment so I planned accordingly since my wife and I wanted to have a second child. Although I'm pretty sure that I am currently completely infertile (as a result of my treatment), using some of my previously-banked sperm my wife and I underwent an in-vitro fetilization (IVF) procedure which resulted in the next miracle to present in my life, as shown in the following sonogram image (click to enlarge):
Yup, you got it. This sonogram image captured during my wife's pregnancy exam shows her 12 weeks pregnant. It took an IVF procedure to make it happen but my banked sperm came out of their cold liquid
Nitrogen sleep to successfully do the job. It's a wonderful feeling seeing the baby's beating heart. I'm amazed that the doctors can quite-accurately predict the most probable date of birth. In this case it's
March 10, 2012. We don't yet know the gender of the baby, but we'll be happy either way.
Note added later. . . the 33 week 3D-rendered sonogram image shows our healthy baby boy still in the womb and everything on track for our March 10 expected delivery date. We're excited to give Riki a little brother.
The main reason I share this info is to let others know that infertility following HSCT is not a hopeless situation and it can be overcome. Planning ahead, together with the application of some medical science
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and a little luck can return the gift of life, as it has for my wife and I. So if you need the scientific proof that it is possible to once again become a father (or mother, since women can still have a normal pregnancy following HSCT if using the right starting materials) following the sterility conferred by HSCT, look no further than this sonogram image confirming it is possible.
Just a last note. . . . I'm pretty sure I'm the first person from North America to undergo HSCT treatment
outside of a study to cure my MS. I wonder if I am also the first HSCT-treated MS patient to now be expecting a healthy baby? Perhaps. But anyway, if so I'm glad to prove it can be done. Booyah!
Meet Kai Takahashi Goss. Born a little ahead of schedule, but healthy to grateful parents on Feb 23,
2012 (click to enlarge):
The Cure for Multiple Sclerosis
Detail of my adventure with the only cure for Multiple Sclerosis. Hematopoietic Stem Cell
Transplantation (HSCT).
Thursday, December 29, 2011
2 year report - Enduring Cure Status
Happy New Year and best wishes for a prosperous and healthy 2012!
If you have come to this blog for the first time, you may find reading the following page first will be useful. . . . . http://themscure.blogspot.com/2010/06/stem-cell-transplantation-reference.html
Wow. It's been two years already since my HSCT procedure. I still understand the importance and significance of having undergone HSCT to cure my MS, but I think about it less these days because curing my MS has instilled normalcy to my daily function and has allowed me to move on with my life. Now that I have regained my life I think it would be a shame to continue to dwell on the way things 'used to be.' So these days more ordinary and mundane issues dominate my thinking. Things like my son's school, the job, grocery shopping and meeting with friends & family to enjoy the here-and-now. The topic and thought of MS does not rear its ugly head as it previously used to. Quite frankly, as far as my physical health is concerned, I spend far more time thinking about my cholesterol level (which I am effectively controlling) than I do about how MS has affected my life. And I'm accepting of this. For my own life I'm completely OK with MS fading from my existence. I'm glad to say that (thanks to HSCT) I have vanquished MS.
As time goes by following my transplantation procedure, it is ever more clear to me that there is no question HSCT has successfully met (and continues to meet) my expectation of what a cure for MS
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should be; 100% stopping of the underlying MS disease activity and progression. Since my transplantation procedure two years ago, my MS disease progression has been completely stopped. And on top of this I have also experienced significant improvement (reversal) of most of my pre-existing symptomatic manifestations. I will explain further regarding my current status in the following paragraphs. . . . .
Although I can't currently run a mile (in fact I can't run at all out of fear of falling down due to some residual foot numbness), I can walk a mile-and-a-half without stopping to rest which I could not do prior to HSCT as I was at EDSS 3.5 at that time with a maximum walking range of only several hundred meters without rest. Today post-transplantation I'm improved to EDSS 2.0 and can walk substantially further, improved to the point that with a little forethought on planning & managing my daily activities, I less often notice that my legs are slowing me down. I no longer see a neurologist (no longer necessary) and I love that I no longer take any medication or treatment of any kind for MS. No more regular injections
(Avonex that I had taken for 15 years prior to HSCT). Yipee! My future belongs to me again, not a wheelchair.
Following myeloablative HSCT the human body is rendered antigen naive, causing the body to loose immune memory accumulated through a lifetime of exposure to infectious agents, environmental antigens and vaccines. This "loss of immune memory" phenomenon (immune system becoming "antigen naive") is the biggest part of the overall equation as to why HSCT stops the body's damaging autoreactivity to restore immune self-tolerance resulting in a halting of further underlying MS disease activity & progression. But also, it becomes necessary for myeloablative HSCT recipients to be revaccinated for diseases starting from the beginning again, just like a newborn child. The following single page summary (list as developed by the US NIH / CDC) details the required vaccinations schedule, of which I have already received the first two rounds and am now working with my primary care physician to have the third & final round completed soon. With the exception that my MS disease continues to be halted and continues to slowly improve over time, following this final immunization task I am now
"officially" 100% past the Stem Cell Transplantation era of my life and I expect no surprises to pop up from here on out. (click to enlarge):
On the subject of my MS symptomatic improvement, a quantitative way to explain the change over time is to express it as an EDSS score. In all fairness, the original inventor of the EDSS scale, Dr. JF Kurtzke, had never designed, nor intended the scale to have a granular resolution finer than half-point increments. So I can legitimately claim that my EDSS improvement to date has gone from the original 3.5 to a current 2.0. However, if Kurtzke had designed the scale to have an infinite number of expressed values, then I would actually claim that today I am at EDSS 1.8. Although an unreal EDSS number, I like to think of this 1.8 number as still being meaningful in a way similar to the
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usefulness of the mathematical imaginary number i that is irrational, but still mathematically valid such as in the case of x 2 + 4 = 0. (Perhaps I'll start referring to this as the EDSS number.)
So to express the improvement I have so far experienced in my disability, my symptoms have reversed a total of 50% as shown in the following graph I have created to characterize the improvement I have seen over time. However, even though my symptoms do continue to improve, the change over time is significantly slowing to the point that I cannot now discern the improvement over a shorter interval of time, as opposed to the period prior to 18 months post-transplantation when I could clearly notice improvement over a shorter interval of time. It may take several more years for me to directly notice any more 'specific' improvement from where I stand now. But no stress on my part. . . . The activity and progression of my MS remains halted and I'm happy with the magnitude of improvement that I have so far achieved. (click to enlarge):
For those that are unfamiliar with the Kurtzke EDSS scale, you can read about it here on Wikipedia which summarizes it well: http://en.wikipedia.org/wiki/Expanded_Disability_Status_Scale#cite_note-Kurtzke-0
As for a more detailed explanation of my current post-transplantation physical status, I don't want to be excessively verbose in what I write on this posting. So if you wish to read the contiguous details you can read the following (18 month status update) page, and then add to it what I have written below: http://themscure.blogspot.com/2011/06/18-month-report-sustained-cure-status.html
First off, I have only three remaining symptoms (compared with about ten prior to HSCT) that I have the ability to detect some residual symptomatic manifestation that is left-over (unresolved) from purely preexisting (pre-HSCT) issues (as I no longer have any further active, or worsening MS disease progression).
These are:
1) Slight right-hand numbness that has improved from baseline, but I can still detect a little residual sensory deficit. This symptom doesn't bother me and is inconsequential. Although admittedly my writing is not as neat and legible as it once was before MS. But at least I have regained the ability to write with my hand that I had previously lost. The same applies to buttoning my shirt which requires some degree of feeling in the fingers to enable the required finger dexterity. I no longer have my wife fasten the buttons on my shirt for me because I have regained the ability to once again do this myself.
2) Leg weakness that has improved from baseline but still persists and becomes evident when I walk
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long distances. However, I'm fortunate to have experienced approximately 500% improvement of my walking distance post-transplantation.
3) Foot numbness which has also improved approximately 50% since my transplant.
These are the only symptoms today that I can notice, and only symptoms two and three have any affect on my life. I appear from the outside to now walk normally (prior to HSCT I often walked like I was a little drunk even when sober), but unfortunately the partial foot numbness prevents me from running because I would likely fall down in doing so because I lack a sufficient amount of tactile feeling feedback to command my feet in a suitably coordinated way for running that might result in injury if I tried. Oh well, I'll give running a try in several more years once more sensory feeling returns to my feet, which I suspect it might.
My leg weakness could use a little more descriptive information to understand what is happening with me post-HSCT (as is similar to many people with MS-induced leg weakness). I'm not an expert on nerves, but nerve function and action potential is actually a rather straightforward electro-chemical process in which nerve conduction is explained by chemical pathway operating mechanisms involving sodium and potassium ion channels. You can read more about it here if you're interested: http://en.wikipedia.org/wiki/Action_potential
I also borrowed the following graph from Wikipedia via the GNU free documentation license. In its most simplistic explanation, once a nerve has been electro-chemically commanded (stimulated), the rising phase allows the conduction of signals to the desired end-muscles (in this case the legs). Immediately following the falling phase of the nerve action potential (some may say work function) undershoots the resting potential due to chemical depletion. In the case of healthy functioning nerves in people without
MS (and in young people in particular), this undershoot time period (called the refractory period in which the nerve essentially ceases operating during this time period) lasts for only a very short time. But as is often the case with people that have been afflicted with MS, this refractory period in an affected muscle group does not recover quickly. When I was young I could sit and rest for just a short period of time following strenuous physical activity to recover. No more. Once fatigued, it takes a rather long period of time to fully recover my leg strength to continue on. Sometimes several hours. A residual affect of my pre-HSCT MS. (click to enlarge):
So at this point in time the only two things I would hope for to improve my post-MS physical life is to regain enough feeling in my feet to allow me to resume running
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once again, as well as a shortening of the (leg-associated) nerve refractory period so that I will face the fewest possible circumstances of ambulation restriction due to muscle-tiring. This is all within the realm of possibility. I will report accordingly if/when things unfold.
It is also important to note that prior to 18 months post-HSCT my pre-existing MS symptoms that remained would fluctuate in intensity over an interval of several days, or weeks. Now at two years posttransplantation my pre-existing symptomatic intensity has stabilized and my symptomatic manifestations are consistent from day-to-day. I generally don't have "up" days and "down" days. Each day is reasonably consistent with all the other days.
From now on I plan to make yearly updates regarding my post-HSCT status. However, I may make a few other postings on the related topic of HSCT to cure MS if I feel like doing so.
Last note. . . . I have so far been able to share my knowledge and experience with approximately a dozen other people that have gone on to receive HSCT for their own MS at various facilities around the world.
And the good news is that I am currently communicating with approximately another dozen people that will also soon be seeking or receiving HSCT. Although I don't give medical advice, I am happy to share my info and opinions based upon what I know about HSCT as the only current cure for MS that can be had at the following locations that I am aware of (and I'm sure there are likely more treatment facilities that I am not aware of): http://themscure.blogspot.com/2011/06/getting-into-hsct-treatment-if-you-have.html
For those that do receive HSCT to cure their MS, welcome to the club! We are still a small, but growing cadre. And I'm always happy to see another person beat their MS. Always.
Posted by George Goss at 10:58 AM 4 comments
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Tuesday, June 28, 2011
Getting into HSCT treatment if you have MS
On this page I will not go into the well-established science indicating the superiority of HSCT treatment efficacy for MS as compared to other treatment modalities (i.e. drug therapy) to effect curative results
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in those with MS. For such details please visit my scientific explanation & references page here: http://themscure.blogspot.com/2010/06/stem-cell-transplantation-reference.html
For those people with MS that are interested to actually receive HSCT treatment, there are a few options that I am currently aware of that I will explain about further.
The main decision that an MS patient considering HSCT must initially make is "which HSCT protocol to seek?" (But there may also be other relevant considerations, such as cost.). There are basically two similar, but different HSCT protocols available that are not identical and deciding which protocol to seek will guide the patient to the specific facility that will administer it. It is important to note that both protocols have so far demonstrated substantially equivalent (very good) curative efficacy based upon the clinical trial population results currently at 9 years post-transplantation. However, there may be other considerations affecting treatment decision which I will explain in more detail.
The first HSCT protocol is a "myeloablative" chemotherapy protocol that effectively eliminates nearly the entire in-vivo B- and T-cell lymphocyte population of the body. (These are the self-intolerant immune cells that are attacking one's own body that causes MS symptomatic progression and eliminating and replacing them with newly-created naive cells is necessary to stop the autoimmunemediated destruction of the body's nervous tissue.) Such myeloablative high-dose chemotherapy also results in near-or-complete elimination of the endogenous bone marrow of the body, making hematopoietic stem cell infusion necessary for engraftment and re-growth of the bone marrow
(otherwise the patient would surely die without such stem cell autograft rescue). This therapy uses a very effective BEAM chemotherapy administration which is the protocol followed by the US-based
HALT-MS clinical trial conducted at the Fred Hutchinson Cancer Research Center in Seattle, Washington
(and is also the protocol I received at Heidelberg University Hospital in Germany).
The alternative "non-myeloablative" (also sometimes called "lymphoablative," although both protocols ablate lymphocytes as the main objective & result of the treatment) protocol HSCT for MS was originally clinically-developed by Prof. Shimon Slavin and Dr. Richard Burt that originated from Prof. Slavin's early observations in a patient with autoimmune diseases that he treated in the early 1980s that resulted in complete cure, together with proof-of-principle in animal models of multiple sclerosis, SLE (lupus) and uveitis (an eye inflammation & blindness disorder that often has an autoimmune component). This novel treatment approach uses a strongly lymphoablative chemical cocktail that is less myelotoxic, destroying a large portion of the in-vivo lymphocytes while sparing a substantial portion of the bone marrow from destruction. This approach allows the damaging autoreactive T-cells to be substantially diminished, while preserving enough bone marrow to allow a shorter duration of time the body must survive with a degraded (but not ablated) immune system. Further, the reason for use of a HSCT autograft is only for the purpose of shortening the timeframe for immune system recovery. The interesting thing about this therapy (as opposed to a myeloablative protocol) is that the patient would likely survive the procedure without a stem cell rescue autograft (although undoubtedly the recovery timeframe would otherwise be longer without it). Administered properly, here is a graph I created that shows the relative engrafted hematopoietic cell population + corresponding innate immune system cellular recovery timeframe for both protocols relative to each other (click to enlarge):
Prof. Slavin & Dr. Burt had originally developed the non-myeloablative therapy for the main purpose of making a safer and less-risky treatment that maintained optimum curative efficacy. It also
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appears to have the added benefits of a more prompt recovery timeframe that allows the average patient to more quickly resume a normal lifestyle following treatment together with lesser probabilities of causing early adropause / menopause and infertility. The myeloablative protocol on average appears to require a longer recovery timeframe for most patients together with likely permanent fertility impairment and possible hormone dysfunction, of which is less likely with the non-myeloablative protocol. So I know what you're going to ask. . . . . . . a very valid question. . . . . . "If there is a clearly demonstrated advantage in the safety & recovery profile of the non-myeloablative (lymphoablative) protocol, why would a person ever choose a myeloablative therapy for MS?" The answer is very simple and comes down to a single issue if you think this might be important like I do. . . . . The BEAM myeloablative protocol so effectively wipes out the body's population of B- and T-lymphocytes that the body completely "forgets" the antigen binding sites (epitope) of environmental pathogens & communicable diseases. Following myeloablative chemo conditioning the body loses immune memory accumulated through a lifetime of exposure to infectious agents, environmental antigens and vaccines.
Therefore a person needs to be re-vaccinated for all childhood diseases again following myeloablative
HSCT. This "loss of immune memory" phenomenon (immune system becoming "antigen naive") is the biggest part of the overall equation as to why HSCT stops the body's damaging autoreactivity to restore immune self-tolerance resulting in a halting of further underlying MS disease activity & progression.
As opposed to the myeloablative protocol, the non-myeloablative HSCT therapy retains "just enough" immune memory cells that the patient need not be re-vaccinated. . . . Dr. Burt has published his reasoning for why the non-myeloablative protocol does not require re-vaccination as follows:
[For the non-myeloablative HSCT protocol for MS] "Autoreactive memory cells survive and autoantibodies, while significantly diminished, generally remain positive."
Following my own research comparing the two different HSCT treatment protocols I arrived at my own decision to seek the myeloablative (BEAM) therapy for one specific reason that is just my own thinking that can clearly be characterized as conjecture since I have no proof or evidence that I am correct in my logic here. . . . the surrogate indication of re-vaccination requirement following myeloablative (BEAM) therapy tells me that the immune system is definitively & completely rendered antigen naive and I think has a better possibility of remaining self-tolerant (and MS progression-free) for a longer period of time as opposed to the non-myeloablative protocol that does not render the body's immune system entirely antigen-naive. So far (at 8 years post-transplantation) the clinical results indicate that both approaches have shown substantially similar curative therapeutic benefit. But the question now is "what happens over a longer timeframe, such as 15 or 20 years?" Will the two approaches still have comparable curative efficacy? No one yet knows the answer because we have not yet hit this milestone. But since I was more interested in a durable long-lasting cure as opposed to a more rapid recovery timeframe, I chose the myeloablative (BEAM) protocol in the chance that it "might" have better lifetime curative success. Of course only time will tell on this since there is no way to know the answer today. I may end up eating my own words at some point in the future if my assumption is proven incorrect. On the other hand, if my assumption is proven correct I'm going to be extremely happy that I chose the myeloablative protocol. Eventually we'll see which way this proves out. But if you have MS and are looking to complete an HSCT procedure, you can consider these factors as part of your criteria and decide for yourself.
[The following comments I've added at +2 years post transplantation following my ability to better complete my scientific understanding of the treatment & outcome data of the two different HSCT protocols for MS and is a copy of a message that I recently sent to a friend that had HSCT for his own
MS]:
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I have only one "potentially" serious concern with the non-myeloablative HSCT protocol as administered by Dr. Burt and Prof. Slavin. . . . Its a good treatment that has been definitively shown to be effective in the treatment of MS. But because the non-myeloablative HSCT protocol does not completely ablate the entire compliment of in-vivo lymphocytes, "sometimes" (a small minority of cases) treated patients with
RRMS have a MS-relapse following treatment which is then quickly put into remission with additional doses of cyclophosphamide infusions post-HSCT. (This "relapse" phenomenon has not been shown to happen with the myeloablative (BEAM) HSCT protocol that wipes out essentially the entire population of the body's lyphocytes; leaving little or no chance of surviving autoreactive lymphocytes that cause MS disease progression.) A little bit this subject matter troubles me because it seems to indicate that for an isolated few treatment cases the non-myeloablative protocol may be "too gentle" and insufficient to wipe out the necessary fraction of the autoreactive lymphocyte population in these few number of people that results in failure to completely stop the progression of the underlying MS disease activity and allows some forward disease progression (although it is probably at least slowed down). If this happens in an RRMS patient, then it should be easy to identify because the patient will manifest an isolated identifiable relapse episode that should be easy to temporally-spot and treat. However, what happens in isolated progressive (SP or PP) patients in which the MS is not completely stopped by the nonmyeloablative therapy? This is a completely unstudied area and creates some concern for me that there could be some progressive patients (PP or SP) that do not have "halted" MS disease activity in using the non-myeloablative HSCT protocol. If such cases do exist, then it would seem logical to me that they would also likely benefit from cyclophosphamide re-treatment. But how to identify such "failed" progressive patients? This would seem to be much more difficult to determine because SP and PP MS'ers don't have isolated relapse activity, just further progression and accumulation of MS-induced disability that does not remit. So the question for me is manifold. . . . . how to define an insufficient stopping of progressive disease activity following non-myeloablative HSCT? And if it is determined to be the case, when and how to re-treat with cyclophosphamide to arrest underlying residual disease activity?
I'm just now coming to my own recent conclusion that it might be preferable for progressive (SP and PP) patients to favor a fully myeloablative (BEAM) protocol to avoid the potential possibility of being caught in this small group of non-myeloablative-treated HSCT patients that experience incomplete diseasestopping and further MS progression. Doing so will likely prevent the possibility of being accidentally caught in such a difficult-to-diagnose / identify situation. But no need to panic reading my words as this is all just pure conjecture on my part. I have no direct evidence this is going to be a problem. I still strongly favor non-myeloablative HSCT over no HSCT treatment at all for MS patients with any evolutionary form of the disease. So if it were me with a progressive disease status and I had to choose between a non-myeloablative HSCT procedure (Dr. Burt at NWU in Chicago or Prof. Slain at CTCI in Israel) or no treatment at all, definitely I would absolutely go for the non-myeloablative treatment without hesitation. But on the other hand, as a progressive MS'er (I was) and had the option (I did) of seeking a myeloablative or non-myeloablative HSCT protocol I would choose the myeloablative protocol, if
available to me (it was and I did).
So here is my current updated thinking based upon my understanding of the differences in "potential"
HSCT protocol outcomes. . . . If it were my own respective MS disease status, I would favor the myeloablative (BEAM) HSCT protocol for progressive (SPMS, PPMS) cases. and either of the HSCT protocols for relapsing cases of MS. However, with no other option, I would be totally OK with receiving the non-myeloablative HSCT protocol for my progressive MS since it would still be a superior-probability option to potentially stop my MS as opposed to all other current pharmacological therapeutic treatment approaches.
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The good news about getting HSCT treatment for MS is that it is not controlled by a single medical facility. It can be had at any number of hospital facilities around the world with widely-varying treatment prices. I only beg you to have it done at a proper & reputable hospital facility experienced in stem cell transplantation. HSCT is a serious & complex procedure. When performed properly it is a relatively safe procedure. But if performed improperly or if post-transplantation monitoring & care is done in a sloppy manner, it can result in severe life-threatening complications. So please make safety your #1 priority (as
I did) when deciding where to seek HSCT treatment. A reputable experienced hospital facility should have a well-documented good safety record. Heidelberg (where I went) has a mortality rate in the sub-
1% range. Much better than the average of 3% - 5% often (mis)quoted at other average treatment facilities around the world. I'm sure there must be additional facilities elsewhere in the world that I have not listed here, but I am not aware of them. You can do your own research to find an alternate hospital if you desire. Please be wary of inexpensive third-world treatment locations that are offering a price "to good to be true." Don't risk your life gambling on getting a good treatment price for a sophisticated & complex procedure such as HSCT where patient safety should be a priority. A cheap treatment does not make up for the value of your life.
[* Full disclosure * : Except for having received HSCT for myself at Heidelberg University Hospital for my own MS, I have no direct connection or business/financial interest with any of the following listed facilities and have absolutely no competing interest.]
Heidelberg University Hospital, Germany
Professor Anthony Ho
This is a myeloablative (BEAM) HSCT protocol.
Approximate cost (without complications) 55,000 Euros
This is Europe's #1 cancer research & treatment facility. World class and as good as they come from a treatment perspective, Heidelberg performs hundreds of HSCT procedures every year (for cancer) so they know what they're doing. I won't describe it more because I've already written all about it in this blog.
The only single additional piece of general information I will add that I just found out about today from
Asher Cohen who is currently (June, 2011) undergoing HSCT for his own MS in Heidelberg. . . . . I had my own HSCT during December so it was cold weather outside so I did not previously become aware of this.
. . . . apparently Heidelberg University Hospital does not have air conditioning to cool the patient rooms during summer (although they do have well heated rooms during winter such as when I was there in
December). This is a complete shock to me !! I really wonder what kind of modern hospital would not have any air conditioning to keep patients cool in the summertime. I am saddened to learn this because
I am otherwise so impressed with the hospital (and especially the staff). So just a suggestion . . . . if you have MS and are going to receive HSCT treatment there, try to plan for a treatment schedule anytime of the year other than summer time, lest you will be cooking in your room. Any other time should be OK.
Be forewarned.
I will also add some additional important info regarding the criteria that MS patients must meet for acceptance into HSCT treatment. Each and every MS patient must first be approved by the Heidelberg
Neurology Department. Although they will consider all data points that make up the puzzle of each patient's specific case, the following list can be considered "general guidelines" that MS patients should
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meet and show (through documented evidence, primarly through each patient's own medical records) in preparing the treatment application for approval. As a standard procedure all MS patients seeking
HSCT in Heidelberg will need to have a neurological exam, consultation and MRI scan as part of the approval process. Basic inclusion criteria as follows:
 RRMS with failure of at least one second-line (drug) therapy.
 Progressive (SPMS or PPMS) with detectable signs of disease activity (which I assume means
MRI lesion activity).
 Overall, if a patient has clinically-definite MS and continues to worsen despite the use of an approved immunomodulator drug, then acceptance for HSCT is likely (because drug therapy is not being shown to effectively stop disease progression).
 Must be otherwise healthy & competent to tolerate stem cell transplantation (the transplantation unit also does their own battery of tests prior to HSCT treatment to establish this).
 These are "basic & general" guidelines as there might be other contributory or mitigating factors associated with an individual patient case that may additionally contribute to the decision process as determined by the Heidelberg Neurology department.
If you would like to seek HSCT treatment in Heidelberg, you can e-mail your inquiry to Dr. Niko Bender
(Heidelberg University Hospital stem cell transplantation coordinator) at the following e-mail address:
Niko.Bender@med.uni-heidelberg.de
Ottowa General Hospital, Ottowa, Canada
Dr. Mark Freedman
This is a myeloablative HSCT protocol.
Dr. Freedman holds a very special position in the worldwide MS community. He is one of the VERY FEW neurologists anywhere that understands, supports and performs HSCT for MS. I am glad to see him persevere in the face of grossly-unfair criticism from those that ridicule HSCT as a treatment for MS.
Clearly such critics have no understanding of the actual underlying (immunological) pathology of MS and of the tremendous demonstrably positive clinical efficacy realized from utilizing HSCT as treatment of
MS. As opposed to most neurologists around the world, Dr. Freedman has a clear vision and outstanding scientific-understanding of the well-established benefits of utilizing HSCT for treating those afflicted with
Multiple Sclerosis.
Dr. Freedman had previously run a randomized stem cell transplantation study in Ottowa, but the trial is now closed because they have already completed treatment of all study participants and is no longer available to new patients for treatment.
Here is the currently-closed trial he was managing:
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Autologous Stem Cell Transplant for Multiple Sclerosis (MS/BMT) http://clinicaltrials.gov/ct2/show/NCT01099930
However, the good news for those MS patients in Canada (only) enrolled in the Canadian health care system, Dr. Freedman continues to treat patients outside of clinical trial & study work. So if you are
Canadian, you can get HSCT in your own country if approved for treatment. (Sorry for those MSers outside of Canada as this treatment will not be available to you.)
Dr. Freedman's HSCT protocol utilizes an interesting (and effective) balance of Busulphan,
Cyclophosphamide and rATG in sufficiently large doses to effectively be both myeloablative and strongly lymphoablative.
Here is a well-spoken short video featuring Dr. Freedman. . . .
[Dr. Mark Freedman on] MS and Stem Cells: Time is brain in MS http://www.youtube.com/watch?v=NhKci3UzSGE
Again, Dr. Freedman's HSCT for MS is only available to those in Canada. Erin McGuey (who's husband
Chris underwent this treatment in Ottowa, you can read their blog here: http://my-end-toms.blogspot.com/ ) relayed the following helpful information & insight:
"In terms of the clinical trial in Ottawa, it is in fact over. The last patient included in the trial was treated
in February 2010.
However, other patients, such as Chris, are now being treated outside of the trial. They are being prioritized against patients receiving bone marrow transplants for cancer, which is why we had a two week delay for the transplant.
For Canadians, I have been recommending that they have their neurologists refer them to Dr. Freedman.
Dr. Freedman and Dr. Atkins (the hematologist) both examine you and determine if you are a good candidate for the treatment.
. . . . they told me that they have seen their best results in patients that currently have relapse-remitting,
but are starting to move towards secondary-progressive.
In the trial, they treated MS patients that had higher EDSS scores, in part because of how [it used to be] high risk the procedure is for a non-life threatening disease.
At this point, I really think they are evaluating each patient on a case-by-case basis.
The good news for Canadians, is that there is NO cost for the transplant, other than relocation for the procedure and for the drugs you use as an outpatient (if you don't have any private insurance). The bad
news is that I do not believe they are treating anyone outside of Canada since it is not a trial." [George's
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comment: Lucky Canadians! How long does it take to get Canadian residency & citizenship? Am I also required to serve in the Canadian armed forces? :-)]
Division of Immunotherapy and Autoimmune Diseases (DIAD) Northwestern University Feinberg
School of Medicine, Chicago, USA
Professor Richard Burt
This is a non-myeloablative HSCT treatment protocol.
Approximate cost (without complications) USD $150,000
Dr. Burt is the first doctor to conduct US-based non-myeloablative HSCT clinical trials for MS, based upon initial work completed by & together-with Prof. Shimon Slavin that currently utilizes some subset combination of Fludarabine, Cyclophosphamide, Campath-1h and rATG (all strongly lymphoablative agents that does not substantially ablate the bone marrow).
There are few doctors in the world (likely none) that have more experience utilizing HSCT for the treatment of autoimmune disorders such as MS. I can't add a lot of additional information specific to his treatment program here because I have not recently spoken with any of the medical staff at Feinberg.
The only additional important piece of information that I can provide is that they are currently running a phase III clinical trial that a few MS patients may be able to enter and enable medical insurance to pay for the procedure (but it is EXTREMELY difficult because the inclusion / exclusion criteria will eliminate
99%+ of patients seeking treatment). However, DAID is also treating people as "paid patients" outside of the trial. I have talked to a few other people that paid for the HSCT therapy with Dr. Burt but I do not not know what the specific inclusion / exclusion criteria is. I'm sure it is not the same as (but easier to be accepted) compared to the clinical trial, but likely does favor relapsing patients where inflammatory processes' dominate the disease pathology. If you are progressive you can still inquire with them. Here is the DAID website with contact information:
DIAD (Division of Immunotherapy and Autoimmune Diseases), NWU Chicago, IL http://www.stemcell-immunotherapy.com/index.html
WHO WE ARE: Richard K. Burt, MD http://www.stemcell-immunotherapy.com/who_burt.html
International Center for Cell Therapy & Cancer Immunotherapy (CTCI) Tel Aviv, Israel
Professor Shimon Slavin
This is a non-myeloablative HSCT treatment protocol.
Approximate cost USD $94,000
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Prof. Slavin is a world renown doctor with an extensive & distinguished background in cancer and immunological research & treatment having previously worked at both Stanford University and Fred
Hutchinson Cancer Research Center together with Dr. E. Donnall Thomas (winner of the 1990 Nobel prize in medicine for stem cell transplantation). Prof. Slavin is the doctor that originally conceptualized the approach for using a non-myeloablative (he also refers to it as a reduced-intensity conditioning regimen) HSCT protocol for the treatment of hematologically-rooted autoimmune disorders such as MS.
Understandably, Prof Slavin's protocol today is quite similar to what Dr. Burt is doing in Chicago (since they have both collaborated in early work) in which Prof. Slavin utilizes Fludarabine, Cyclophosphamide and Campath (all strongly & preferentially lymphoablative agents).
I don't have any first-hand knowledge of the CTCI facility, but I have communicated with several patients that have received treatment with Prof. Slavin utilizing his non-myeloablative HSCT for their MS. They have let me know that the treatment they received from Prof Slavin was excellent, and they have experienced very good curative efficacy success (both stopping of MS progression and some significant
MS symptomatic improvement) resulting from Prof. Slavin's HSCT treatment, although every individual case is likely to be different. I also have had the opportunity to communicate closely with a PPMS patient that completed (September, 2011) Prof. Slavin's non-myeloablative HSCT protocol at CTCI. As of the date of this blog posting it is still too early to gauge the curative benefit he is likely to experience from HSCT, but he reports that his treatment and experience at CTCI was excellent and he feels that he was well cared-for during his stay in Tel Aviv and that he enjoyed interacting with Prof. Slavin. This particular MS patient has let me know that he is happy to share the details of his CTCI HSCT treatment experience with anyone else that is seriously considering HSCT treatment at CTCI. Send me an e-mail and I will connect you with him.
Prof. Slavin on Anti-cancer Modalities at CTCI - Overview: Chapter 1 http://www.youtube.com/watch?v=FzrHS5YgbbE
Prof. Slavin on Anti-cancer Modalities at CTCI - Overview: Chapter 2 http://www.youtube.com/watch?v=SsBF509OCY8&feature=related
Because Prof. Slavin's non-myeloablative HSCT protocol is so safe and efficacious, I believe CTCI's patient acceptance criteria is the most flexible and open. Likely CTCI would treat any MS patient (RR, SP, PP) that has a postive diagnosis of clinically definite MS. I would bet they would probably reject few (if any) patients seeking treatment, likely wanting to evaluate each patient individually based upon the specifics of each case without regard to inflexible generalized inclusion/exclusion criteria. I believe you would likely find Prof. Slavin very cooperative in evaluating each case for treatment.
CTCI is additionally offering their own proprietary Mesenchymal Stem Cell (MSC) "infusion" therapy for
MS that does not include chemotherapy (approximate cost $32K). The procedure is very similar to a phase I clinical trial currently being performed here in the US by researchers at the Cleveland Clinic.
Keep in mind that this is very early study work which, by design, is not intended to determine efficacy of the treatment, but is instead intended to evaluate safety & tolerability. So the treated study-population is quite small and I would not expect to see convincing data as to how well this specific procedure works as curative therapy until a number of years from now. However, I am optimistic about this line of work and am really hoping for good clinical efficacy results because the theoretical foundation science is valid
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for possibly restoring some lost nerve function.
Here's the US-based MSC infusion phase I trial info. (In the title of this phase I Cleveland Clinic study they wrongly use the word "Transplantation." I really wish they had not used this nomenclature because this is not a classic transplantation procedure because it does not utilize chemotherapy and the wording is only likely to confuse some people. It is actually just a (re)infusion procedure. I'm not sure why the FDA let them incorrectly use the term "transplantation." Oh well.): http://clinicaltrials.gov/ct2/show/NCT00813969
And here is a video report on the subject from Case Western: http://www.youtube.com/watch?v=-S49VSZheKk&feature=player_embedded
For this therapy at CTCI, same as the Cleveland Clinic protocol, MSC's are collected from the patient's own bone marrow (probably surgically aspirated from the pelvic bone, but they may also do it by using a mobilization drug (G-CSF) and then perform PBSC collection from the peripheral bloodstream) and then the MSC's are replicated (culture expansion) ex-vivo over a period of 1-3 months to create a substantially large MSC population (in the neighborhood of 1-2 million stem cells per kilogram of body weight) and then re-infused back into the body. (Cleveland Clinic does it all via IV infusion directly into the bloodstream. Slavin does approximately 1/3 via IV infusion and 2/3 via intrathecal injections into the spinal column.)
Clinical paper (for MSC therapy use in MS and ALS): http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3036569/
The in-vitro research data with MSC's as treatment for MS looks quite promising. I'm not dismissing it, but because the treatment does not include chemotherapy to ablate self-intolerant immune cells I would not personally do it as a first-attempt treatment because I think it extremely unlikely (or impossible) that it would stop the underlying MS disease process. Although. . . . . . I might seriously think about doing it following HSCT in the possibility that it may effect repair of already-damaged nerve structure & function. However, such an effect has yet to be proved or disproved in human clinical efficacy trials. Here is the small amount of preliminary phase I EDSS clinical outcome data as presented by Dr. Dimitri Karussis which is not negative, but is also not overwhelmingly positive nor consistent and is why today (without further data) I am somewhat ambivalent about the use of MSC's for MS. (click to enlarge):
However, for everyone else considering such treatment the decision is yours, not mine. I'm just glad
CTCI offers actual HSCT that includes chemotherapy that has already been repeatably-proven in population studies to be effective and enable substantial EDSS improvement following transplantation.
But if you decide to chance-it and go for the MSC therapy alone without first eliminating the autoreactive immune cells of your body, don't be surprised if there is little, or no positive clinical outcome beyond a placebo effect.
Here is an article & video of a Canadian woman that received MSC infusion therapy at CTCI that appears
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to have worked well for her specific case. Remember that each case is likely to respond differently and her case does not directly translate to anyone else. But I have to admit, this is very encouraging and I'm glad to see the work continue and available for those that choose to receive it: http://www.ctv.ca/CTVNews/Health/20081116/ms_treatment_081116/
The following video presentation by Dr. Dimitri Karussis who works, or worked together with Prof. Slavin describes the science behind the various treatment protocols they provide, including the MSC therapy
(which I personally do not favor as first-attempt treatment but would consider it following HSCT once the antigen epitope has been rendered naive via chemo ablation): http://www.informed-scientist.org/presentation/bone-marrow-stem-cell-transplantation-in-multiplesclerosis
CTCI homepage: http://ctcicenter.com/
Prof. Slavin Bio: http://ctcicenter.com/prof-slavin-and-team.htm
Manipal Hospital, Bangalore, India
Dr. Amit Rauthan
This is a myeloablative (BEAM) HSCT treatment protocol.
Approximate cost USD $40,000
This is the latest facility listing I am adding to this page. Dr. Rauthan that oversees the HSCT patient treatment at Manipal Bagalore is experienced in BMT / stem cell transplantation from prior experience working in a hospital in Atlanta, Georgia, USA. In addition, Manipal Bangalore stem cell transplantation department has some form of cooperative relationship with the University of Minnesota. Since Dr.
Rathan is a classically-trained hematologist / oncologist he knows, understands and is experienced in how to properly administer BEAM protocol autologous HSCT.
Manipal has modern medical equipment and follows internationally-accepted medical protocols. (I especially liked the good sign that they utilize positive-pressure HEPA-filtration patient recovery rooms following HSCT. Very appropriate and nice.)
Additionally, I think it important to highlight the fact that Manipal fills a currently-unmet need in the MS community in which the attractive pricing of the procedure at Manipal ($40K) will likely open and make available the HSCT procedure to many MS’ers that are otherwise unable to afford the treatment at other suitable facilities (all of which have a higher treatment price point for the same/similar treatment regimen). I’m glad to know that this (large?) niche market can be served by Manipal for those that choose this treatment route.
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I have not personally (yet) met Dr. Rauthan, and have also not been to India myself (although I’m sure I’ll visit there someday). The credit for finding Manipal and Dr. Rathan to perform HSCT for an MS patient goes entirely to Richard Syrop, here in the Unted States. Richard’s wonderful wife, Bunti, was diagnosed with PPMS with a continuously-worsening disability status over time.
Based upon Richard's excellent understanding of the curative probabilities of HSCT for MS, Richard and
Bunti decided to go with the (good) likelyhood that her underlying MS disease will be stopped via HSCT.
In addition, they both hold realistic hopes for the definite 'possibility' that over time (following HSCT) she might be able to experience a measurable degree of meaningful improvement of her existing MS symptomatic disability status (EDSS approximately 6.0 at time of transplantation).
Richard and I had a chance to frequently communicate before, during and after Bunti’s HSCT procedure at Manipal. I’m not a doctor, but from having gone through myeloablative (BEAM) HSCT for my own MS and having researched the medical treatment aspects rather thoroughly, it sounded to me that Dr.
Rauthan did a superb job of managing Bunti’s treatment regimen and recovery. I didn’t hear of a single medical misstep by Dr. Rathan relative to Bunti’s treatment experience. Although HSCT is normally a tough procedure for anyone to go through, Bunti completed the procedure without any life-threatening complications and is now recovering well following the completion of her transplantation procedure.
(My hat's off to Dr. Rauthan!) I’m looking forward to the day some number of months later when
Richard & Bunti will likely report her MS disease as halted, and hopefully reversed, as well. They have my sincerest best wishes, especially following the decision to tackle MS head on. Kudos to both of you!
Here is some basic information regarding Manipal and Dr. Rauthan:
Manipal Hospital, Bangalore http://www.manipalhospitals.com/
Dr. Amit Rauthan (BMT-experienced in the United States) http://www.dheerajbojwani.com/bone-marrow-transplantation-dr-amit-rauthan-india.html
University of Minnesota BMT program opens in Bangalore, India http://www.cancer.umn.edu/news/releases/2006/manipal.html
I have traded a few e-mails with Dr. Rauthan and he let me know that they have set up a formal acceptance procedure for MS patients seeking HSCT at Manipal. They have additionally formed a patient review committee (a common practice at many hospitals) to review applicant cases for treatment approval. HSCT being such a serious and complex procedure they want to make sure that the treatedpatient is not going to be put at excessive risk while simultaneously attempting to maximize the curative benefit of the treatment. You can send a treatment request to the following Manipal e-mail address (I’m sure at some point they will ask for some personal medical info and/or medical records that you should gather together) and then they will make an acceptance decision within 2-3 weeks timeframe following review. Please specifically reference that you are interested in BEAM HSCT for treatment of your MS with Dr. Amit Rauthan in Bangalore:
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mipc@manipalhospitals.com
Also, Richard Syrop has graciously said that he would be happy to share information about their experience at Manipal for any MS patients that are serious in seeking treatment at Manipal and would like to learn more about specific experience details. Please be considerate of Richard’s time. He has a day job and family duties that he must attend-to and think he would appreciate not answering overlylengthy e-mails and questions. Keep it basic & simple and I think you might be able to get the info you need from Richard. Thank you Richard! Here is his e-mail address: richardsyrop@hotmail.com
As I mentioned previously. . . just because I am not aware of other facilities, that does not mean that there are not other hospitals that would be willing to perform HSCT for MS patients. Please feel free to look around for other (good & safe) treatment facilities if you are so inclined. You may want to use the following EBMT link to help in your search as I did (which is how I found Heidelberg University Hospital): http://www.ebmt.org/index.htm
I just wanted to add a last note about India. . . . In a previous posting I mentioned that the Apollo
Hospital network in India would also be willing to perform HSCT for those with MS. And when I contacted them in August of 2009 they did agree to do HSCT for an MS case like me, sight unseen.
However, since that time the CCSVI scam craze has gotten so big and out-of-control that now Apollo appears to be refusing to to do HSCT for MS because they claim they consider it "experimental" (when in actuality it is far from experimental since it is now in final FDA phase III clinical trial), and instead are now pushing MS patients to get CCSVI treatment. Since CCSVI is not only 100% experimental with absolutely no evidence at all (none, zero, zip, nada) that there is ANY proven beneficial effect whatsoever from CCSVI treatment for MS (there is no valid clinical study data to even remotely suggest that it has any beneficial effect on MS beyond a temporary placebo effect), I am sorely dissappointed that Apollo has decided to take this hypocritical & unethical approach putting money squarely ahead of patient's health. I have now lost all respect for the Apollo hospital network in India and would never even suggest to anyone to consider treatment there. Very sad.
If I can help anyone with understanding more about treatment issues & options, feel free to send me an e-mail. I'll try to respond as soon as I can: georgegoss@yahoo.com
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