Multiple Sclerosis:
An Overview for
Case Management
Professionals
Susan Raimondo
Connecticut Chapter
Offices in Hartford and Norwalk
860.913.2550 1.800.344.4867
www.ctfightsMS.org
Susan.raimondo@nmss.org
Charlene Breen
Care Management Associates/
Connecticut Community Care, Inc.
Toll-free: 800.654.2183
www.ctcommunitycare.org
What does MS look like?
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Julia—a 35yo white married mother who is exhausted all the time and can’t drive because
of vision problems
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Jackson—a 25yo African-American man who stopped working because he can’t control
his bladder or remember what he read in the morning paper
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Maria—a 10yo Hispanic girl who falls down a lot and whose parents just told her she has
MS
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Loretta—a 47yo white single woman who moved into a nursing home because she can no
longer care for herself
•
Sam—a 45yo divorced white man who has looked and felt fine since he was diagnosed
seven years ago
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Karen—a 24yo single white woman who is severely depressed and worried about losing
her job because of her diagnosis of MS
•
Richard—who was found on autopsy at age 76 to have MS
but never knew it
What is MS?
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Neurological disease
Misguided immune cells
Multiple scars
Unpredictable
Variable
Often progressive
What is MS? cont’d.
• 2-3x women as men
• Usually diagnosed between 20 and 50
• 200 people diagnosed every week in US
• More common in Caucasians, especially
those of northern European ancestry
What Causes MS?
Environmental
Trigger
Genetic
Predisposition
Autoimmunity
Loss of myelin
& nerve fiber
The risk of getting MS is approximately:
• 1/750 for the general population (0.1%)
• 1/40 for person with a close relative with MS
(3%)
• 1/4 for an identical twin (25%)
• 20% of people with MS have a blood relative
with MS
The risk is higher in any family in which there are several family
members with the disease (aka multiplex families).
What happens in MS?
“Activated” T cells...
...cross the blood-brain barrier…
…launch attack on myelin & nerve fibers...
…to obstruct nerve signals
myelinated nerve fiber
myelinated nerve fiber
MS: A Timeline
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1396- Earliest recorded case of MS.
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1868- Charcot describes the disease and finds MS plaques (scars) on autopsy.
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1878- Louis Ranvier describes the myelin sheath (the primary target of MS in
the central nervous system).
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1981- 1st MRI image of MS is published.
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1993- The first disease-modifying agent for MS—Betaseron—is approved in
the U.S.
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1998- Bruce Trapp confirms that the nerve fibers are irreversibly damaged
early in the disease course (probably accounting for the permanent disability
that can occur).
•
2014- There are several medications approved for the treatment of MS and
more in the pipeline.
How is MS diagnosed?
• MS is a clinical diagnosis:
 Signs and symptoms
 Medical history
 Laboratory tests
 Magnetic resonance imaging
(MRI)
 Visual evoked potentials (VEP)
 Lumbar puncture
What tests may be used to help confirm the diagnosis?
 Magnetic resonance
imaging (MRI)
 Visual evoked
potentials (VEP)
 Lumbar puncture
How is MS diagnosed?
• Requires dissemination in time and space:
 Space: Evidence of scarring (plaques) in at least
two separate areas of the CNS
 Time: Evidence that the plaques occurred at
different points in time
• There must be no other explanation
What is the prognosis?
• One hallmark of MS is its unpredictability.
 Approximately 1/3 will have a very mild course
 Approximately 1/3 will have a moderate course
 Approximately 1/3 will become more disabled
• Characteristics that predict a better outcome:
 Female, onset before age 35, sensory symptoms
 Complete recovery following a relapse
An Overview of Treatment Strategies
The MS treatment team includes the person with MS
and a …
Neurologist
Urologist
Nurse
Physical therapist
Occupational therapist
Physiatrist
Psychiatrist
Psychotherapist
Neuropsychologist
Social worker/Care manager
Pharmacist
Primary care physician
What are the treatment strategies?
• Management of MS falls into five general
categories:
 Treatment of relapses (aka exacerbations,
flare-ups, attacks—that last at least 24 hours)
 Symptom management
 Disease modification
 Rehabilitation (maintain/improve function)
 Psychosocial support
FDA-Approved Disease-Modifying Agents
• Aubagio (teriflunomide) *
• Avonex (interferon beta-1a) **
• Betaseron (interferon beta-1b) **
• Copaxone (glatiramer acetate) **
• Extavia (interferon beta-1b) **
• Gilenya (fingolimod)*
• Novantrone (mitoxantrone)***
• Rebif (interferon beta-1a)**
• Tecfidera (dimethyl fumarate)*
• Tysabri (natalizumab)***
* oral
** by injection
*** by infusion
What do the disease-modifying drugs do?
• All reduce attack frequency and severity,
reduce scarring on MRI, and probably slow
disease progression.
• These medications are not designed to:
 cure the disease
 make people feel better
 alleviate symptoms
How important is early treatment?
• The Society’s National Clinical Advisory Board
recommends that treatment be considered as soon as a
diagnosis of relapsing MS has been confirmed.
 Irreversible damage to axons occurs even in the earliest
stages of the illness.
 Treatment is most effective during early, inflammatory
phase
 Treatment is least effective during later, neurodegenerative
phase
• No treatment has been approved for primary-progressive
MS.
• As of 2010, approximately 60% of people with MS are
being treated with a disease-modifying therapy.
MS Symptoms vs Relapses…
How Are They Different?
• MS symptoms are chronic or ongoing indicators of
MS lesion damage to certain areas of the brain
and/or spinal cord
• MS relapses are sudden flare-ups or symptom
attacks that typically last several days to several
weeks
Joy and Johnston, eds. Multiple Sclerosis: Current Status and Strategies for the Future.
Washington, DC: National Academies Press; 2001
How are relapses treated?
• Not all relapses require treatment
 Mild, sensory sx are allowed to resolve on their own.
 Sx that interfere with function (e.g., visual or walking
problems) are usually treated
• 3-5 day course of IV methylprednisolone—with/without
an oral taper of prednisone
 High-dose oral steroids used by some neurologists
 H.P. Acthar® gel
 Plasmapheresis
• Rehabilitation to restore lost function
• Psychosocial support
What are possible symptoms?
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Fatigue (most common)
Visual problems
Bladder and/or bowel dysfunction
Sexual dysfunction
Emotional disturbances (depression, mood swings)
Cognitive difficulties (memory, attention,
processing)
(Heat can worsen many symptoms)
What are possible symptoms? cont’d.
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Sensory changes (tingling, numbness)
Pain (neurogenic, musculoskeletal)
Spasticity
Gait, balance and coordination problems
Weakness, paralysis
Speech/swallowing problems
Tremor
These are symptoms of a number of illnesses,
making diagnosis difficult.
(Heat can worsen many symptoms)
A Word about Temperature Sensitivity
• 70-80% experience heat sensitivity
• 20% experience cold sensitivity
• Slight elevations in core body temperature (related to
ambient temperature, exercise, fever, hot
baths/showers) can cause temporary worsening of MS
symptoms—a pseudoexacerbation
• Cooling strategies (A/C, scarves/vests, cold liquids, cool
showers) can help maintain core body temperature
If a person with MS has a fever, symptoms can
worsen rapidly. Important to find the source of the infection.
How are MS symptoms managed?
 Symptom management continues throughout
the disease course
 Effective symptom management involves a
combination of medication, rehabilitation
strategies, emotional support—and good
coordination of care
 Virtually every medication used to treat MS
symptoms is used off-label
Many symptoms are invisible and
misunderstood.
Cycle of MS Symptoms:
Related and Interdependent
 Fatigue
Depression
 Sexuality
issues
 Cognitive
function
 Spasticity
Constipation
 Sleep
 Bladder
& Bowel
problems
Managing MS Fatigue
• > 80% of people with MS experience fatigue;
many identify it as their most disabling symptom
• Along with cognitive dysfunction, fatigue is the
most common cause of early departure from the
workforce
• MS fatigue is easily misunderstood by family
members and employers as laziness/disinterest
Managing MS Fatigue, cont’d.
Strategies:
• Identify/address contributory factors
 Disrupted sleep; muscle fatigue; disability-related
fatigue; depression; medications
• Develop comprehensive treatment plan
 Energy conservation: planning/prioritizing; mobility
aids; environmental modifications
 Exercise regimen
 Medications: amantadine, modafinil, armodafinil
Managing Bladder Dysfunction
• 80% of people with MS experience bladder problems.
• Major cause of embarrassment and social isolation.
Types
• Storage dysfunction
 Small, spastic bladder in which small quantity of
urine triggers the urge to void
 Sx include: urgency, frequency, incontinence,
nocturia
 Tx includes: anticiholinergic/antimuscarinic
medication
Managing Bladder Dysfunction, cont’d.
Types, cont.
• Emptying dysfunction
 Bladder fails to empty  risk of UTI
 Sx include: urgency, frequency, nocturia,
incontinence
 Tx includes: ISC and
anticholinergic/antimuscarinic medications
Managing Bowel Problems
• Experienced by 50% of people with MS
 Constipation—most common
- Loose stool (related to impaction)
 Bowel incontinence—least common
• Managed best with regular bowel routine
 Adequate fluid/fiber intake
 Exercise
 OTC products as needed
 Anticholinergic medications added to
manage incontinence
Improving Mobility
• 80-90% of people experience mobility impairment due to
weakness, imbalance, sensory problems, or spasticity
• Management strategies:
 Dalfampridine (Ampyra) to improve walking (speed;
weakness)
 Spasticity management
 Exercise/gait training
 Mobility aids for weakness, balance, and fatigue issues
Improving Mobility, cont’d.
Ataxia/Tremor
• Less common MS symptom, but very disabling
• No effective treatments at this time
• Medications that may be tried: propranolol;
primidone; acetazolamide; buspirone;
clonazepam
• Occupational therapy, weighting; assistive
devices
• Thalamic surgery for tremor (generally poor
results)
Managing Spasticity
• Experienced by 40-60% of people with MS
(more common in the lower extremities)
• Management strategies:
 Stretching
 Oral medication (baclofen, tizanidine, clonazapam,
gabapentin, cyproheptidine, dantrolene, dopaminergic
agonists)
 Baclofen pump
 Botox injections; nerve blocks; surgery
• Some spasticity is useful to counteract weakness
Managing Sexual Dysfunction
• 40-80% of people with MS
 Reduced libido (behavioral/environmental strategies)
 Sensory disturbances (anticonvulsant medications)
• Women
 Reduced lubrication (gels)
• Men
 Erectile dysfunction (pharmacotherapy; implants)
• Other contributory factors
 Managing symptoms that interfere with sexual activity/pleasure (fatigue,
spasticity, bladder dysfunction)
 Managing medications to promote comfort and responsiveness
(anticholinergic; antidepressants; fatigue & spasticity meds)
 Feelings and attitudes – education and counseling
Managing Pain
• 75% of people with MS experience pain
• Neuropathic (central) pain
 Paroxysmal pain (trigeminal neuralgia; headache)
• Anticonvulsants
 Continuous pain (dysesthesias)
• Tricyclics; anticonvulsants
• Secondary pain
 Musculoskeletal pain
 Physical therapy; NSAIDs
 Spasticity—As described previously
Speech Issues
• 40-50% experience speech/voice disorders
 Dysarthria – impaired volume control, articulation,
emphasis
 Dysphonia – altered voice, pitch control, breathiness,
hoarseness
• Speech/language assessment:
 Oral peripheral examination, voice eval, communication
profile
• Treatment: includes exercises, strategies and
compensatory techniques to improve speech
clarity, augmentative device or ACC, if needed
Swallowing Issues
• Dysphagia – less common symptom
 Swallowing assessment, clinical history,
examination, videofluoroscopy (modified barium
swallow)
• Treatment
 Exercises
 Dietary modifications/positioning while
eating/chewing strategies
 Non-oral feeding options, if needed
Visual Impairments
Optic Neuritis –
inflammation of the optic
nerve can cause:
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Blurred vision
Dimming of colors
Pain when eye is moved
Blind spots
Loss of contrast sensitivity
Nystagmus:
• Jerky eye movement
• World is “wiggling”
Cognitive Symptoms
• Correlates with number of lesions, lesion area, and
brain atrophy
• Can occur at any time in the course of the disease
• Can occur with any disease course
• Being in an exacerbation is a risk factor for
cognitive dysfunction
Cognitive Symptoms, cont’d.
• Most common problems: memory,
attention/concentration, information processing
• Treatments:
• Disease-modifying therapy, donepezil
• Cognitive rehabilitation (primarily compensatory)
Cognitive symptoms are often misunderstood.
Managing Depression
• >50% of people with MS will experience a
major depressive episode
• Suicide in MS is 7x higher than in the general
population
 Greatest risk factor for suicide in MS is
depression
• Depression is under-recognized, under-diagnosed
and under-treated in MS
• Recommended treatment:
psychotherapy + medication + exercise
Other Affective Disorders
 Bipolar disorder
• 10 times the rate of general population
 Mood swings
• Rapid changes in feelings - anger, irritability, sadness are very common
 Anxiety disorder
• As common as depression, particularly in the early
phases of the disease
 Pseudobulbar affect
• Pathological laughing and weeping
 Euphoria
• In progressive MS, person may be excessively happy
given their situation.
Serious Complications
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Urosepsis
Aspiration pneumonia
Pulmonary dysfunction
Skin breakdown
Untreated depression
Osteoporosis
What are the psychosocial challenges?
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Uncertain diagnosis
Unpredictable course and outcomes
Invisible symptoms
Potential physical and/or cognitive disability
Diminished self-esteem
Impact on relationships and family systems
Uncertain financial future
What are essential psychosocial interventions?
 Disease-related education to enhance
people’s understanding of the disease,
adaptive coping strategies, and available
resources
 Support for the ongoing grieving process as
activities and roles are altered by the
disease
What are essential psychosocial interventions? cont’d.
 Help with important life transitions—
diagnosis, disease progression, disability
 Assessment and treatment of emotional
and/or cognitive problems
 Support for family members
What role does rehabilitation play?
• Rehabilitation offers structured, problem-focused,
interdisciplinary interventions to:
 Enhance/maintain function, comfort, safety, and
independence over the course of the disease
 Educate for self-management and behavior
change
What role does rehabilitation play? cont’d.
• Rehabilitation offers structured, problem-focused,
interdisciplinary interventions to:
 Identify appropriate assistive devices and
environmental modifications
 Prevent injuries and unnecessary complications
 Empower individual and family
Rehabilitation and MS: Medicare coverage
for maintenance programs
• Jimmo Settlement - Maintenance Therapy
• Skilled therapy services are covered when an
assessment of the patient’s condition demonstrates
that skilled care is necessary for the performance of a
safe and effective maintenance program to maintain
the patient’s current condition or prevent or slow
further deterioration.
Long-term Services and Supports
• 60% of people with MS have activity
limitation
• 20-25% need long-term care services
• 14,000 in nursing homes
• 60% of nursing home residents with MS are
under 60 years of age
MS-Related Stresses for Patients & Families
• MS is a chronic disease that many will live with for
decades.
• The unpredictability from day to day and year to year is
difficult for patients and families to handle.
• MS is a disease characterized by change and loss.
• Treatment costs and loss of income threaten patient and
family well-being.
• With more options available and choices to make,
patients and families worry about making “wrong”
choices.
What can people do to feel their best?
• Balance activity with rest.
• Talk with their rehabilitation professional about
exercise
• Eat a balanced, low-fat, high-fiber diet. Drink
plenty of fluids to maintain bladder health and
avoid constipation.
• Avoid heat if they are heat-sensitive.
• Follow standard preventive health measures
for their age group
What can people do to feel their best? cont’d.
• Reach out to their support system, stay connected,
avoid isolation.
• Become an educated consumer.
• Make thoughtful decisions regarding:
 Disclosure
 Choice of physician
 Employment choices
 Financial planning
 Health and wellness
So what do we know about MS?
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MS is a chronic, unpredictable disease
The cause is still unknown
MS affects each person differently; symptoms vary widely
MS is not fatal, contagious, directly inherited, or always
disabling
• Early diagnosis and treatment are important
 Significant, irreversible damage can occur early on
 Available treatments reduce the number of relapses and
may slow progression
• Treatment includes: attack management, symptom
management, disease modification, rehab, emotional
support
What You Can Do
• Be knowledgeable about MS and its symptoms
• Be sensitive to the losses and sadness that people
with MS experience
• Understand the variability of the disease
• Understand that people with MS want to be as
independent as they possibly can
• Contact the National MS Society (1-800-344-4867)
for information, resources and support
(www.nationalmssociety.org)
Society Resources for People with MS
• Chapters around the country
• www.nationalMSsociety.org
• Access to reliable information and referrals (800-344-4867)
• Educational programs (in-person, online)
• Support programs (self-help groups, peer and professional
counseling)
• Consultation (legal, employment, insurance, long-term care)
• Financial assistance
Society Resources for Health Professionals
• MS Clinical Care Network
•
www.nationalmssociety.org/ms-clinical-care-network/index.aspx
Email: healthprof_info@nmss.org
• MS Clinical Care Connection – the Society’s quarterly enews for
clinicians – provides information and resources on a range of topics
related to comprehensive MS care.
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Comprehensive MS library/literature search services
Clinical consultations with MS specialists
Professional publications
Professional education programs (medical, rehab, nursing,
mental health)
• Consultation on insurance and long-term care issues
National MS Society, Connecticut Chapter
www.ctfightsMS.org
659 Tower Avenue, First Floor
Hartford, CT 06112-1269
programs@ctfightsMS.org
860.913.2550
800.344.4867