Choices
Diagnosis
Diagnosing multiple sclerosis can be complicated, not least because there is no single
test that conclusively indicates the presence of the condition.
Multiple sclerosis can present different symptoms in different people at different times
and the process of diagnosis can be a lengthy one.
Symptoms of multiple sclerosis can be subtle, or more apparent and can be
experienced for many months or years.
Some symptoms such as mobility changes are more obvious, but some are not, for
example, fatigue or sensory disturbances. There is no set pattern and some people will
experience symptoms that others will not and these can also vary from time to time,
occurring singly or in combination.
Some people have mild symptoms, while others have problems that are moderate or
severe, taking the form of attacks or ‘relapses’ (a temporary worsening of symptoms).
Other people experience a slow, sometimes almost imperceptible change in their
physical condition with no obvious attacks.
Unfortunately there is no one single test or procedure that can be used to diagnose MS.
Sometimes people are offered an initial diagnosis, which turns out to be incorrect. It is
often a case of watching and waiting to see if new symptoms appear or previous
symptoms recur. This process can be frustrating; it is hard to accept that a conclusive
diagnosis can take months, or years.
Diagnosis is based on a number of things such as looking into medical history,
neurological examinations and a series of tests. Other conditions need to be ruled out
before a diagnosis can be confirmed.
First Steps to Diagnosis
In October 2014, the National Institute of Health and Care Excellence (NICE) issued
new guidelines for the management of multiple sclerosis, including guidelines for the
steps medical advisors, such as GPs and neurologists, should take to reach (or
exclude) a diagnosis of MS.
NICE suggests that the most common symptoms or ‘clinical presentations’ a person
would visit their GP with are:
 Loss or reduction in vision in one eye, with painful eye movements
 Double vision
 Ascending sensory disturbance or weakness (a change in sensation or strength
that moves up the body)
 Balance problems or clumsiness
 Altered sensation travelled down the back when bending the neck forward
 Called Lhermitte’s Syndrome, this can feel like finger being run down the spine,
or a tingling feeling
NICE also suggests that people presenting with these symptoms are often under 50
years old and may have had a previous history of neurological symptoms. These
symptoms have evolved over 24 hours and may have persisted over several weeks or
months.
If you are experiencing symptoms, it is important to make an appointment with their GP
to discuss these symptoms.
A GP will perform a number of blood tests to exclude alternative diagnoses, before
referring you to a neurologist if MS is suspected.
The blood tests NICE recommend a GP carry out before such a referral is made are
below, although not all may be performed:
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A full blood count
Inflammatory marker test
Liver function tests
Renal function tests
Thyroid function tests
Calcium
Glucose
Vitamin B12
HIV serology test
It is worth noting that many other conditions may and do produce symptoms almost
indistinguishable from MS symptoms. For more information see our Choices leaflet – ‘Is
it MS?’
Being Referred to a Neurologist
Only a neurologist can make the diagnosis of MS. A neurologist will perform other tests
to ensure that symptoms are consistent with an inflammatory process in the body and
that all other alternative diagnoses have been excluded.
The process starts with a neurological examination where your full medical history is
taken. The neurologist will then perform simple tests to check movement, coordination,
balance and reflexes.
The neurologist performs these tests to establish whether there are signs of the
inflammatory process in the body. These signs are called ‘lesions’ and occur when the
inflammation process has left scarring on the fatty myelin sheath that surrounds the
nerve. A neurologist will need to establish that lesions have developed at different
times, and in different areas of the body for a diagnosis of relapsing-remitting MS.
If the medical history and neurological examination suggest MS, more tests will be
conducted to look for evidence in the body. The neurologist will make a diagnosis of MS
based on established criteria, such as the revised 2010 McDonald criteria. The
McDonald criteria are detailed in Further Information.
Further tests that may be suggested by the neurologist are as follows:
MRI scanning
A Magnetic Resonance Imaging scan or MRI is used to identify any areas of the brain or
spinal cord that may have scarring. An MRI scanner consists of a large doughnutshaped magnet with a tunnel in the centre. People are placed on a table that slides into
the tunnel. It is a painless procedure, although quite noisy and sometimes lengthy –
between 20 to 40 minutes. It can feel a little claustrophobic but headphones are
provided through which music can be played, and you can contact the MRI’s operator at
any time.
Sometimes a dye called gadolinium is used to enhance the image. The dye is injected
into a vein before the MRI starts. The dye can assist the neurologist in determine what
is a new ‘active’ lesion, and what are older areas of scarring.
NICE state that MS cannot be diagnosed on the basis of the MRI findings alone and
other tests are needed, including the initial neurological examination.
Lumbar Puncture
A lumbar puncture (also known as a spinal tap) is a procedure where a small sample of
cerebrospinal fluid (CSF) is taken and analysed to test for any abnormalities that can
indicate MS. CSF is the fluid that surrounds and protects the brain and spinal cord. This
procedure is done by first injecting a local anaesthetic into the lower back and then
inserting a needle between the lower discs of the spine to draw off the CSF. This
procedure may be performed as either an In Patient or a Day Patient in a hospital
because it is important to rest for several hours after the procedure to allow the body to
recover.
Evoked Potentials
These are very simple electrical tests that measure the time it takes for nerves to
respond to stimulation. Visual Evoked Potentials (VEP) are most commonly used in the
diagnostic process. A conducting gel and electrodes are applied to the scalp. For VEPs,
the electrodes are applied to the rear (occipital region) of the scalp over the brain areas
that register visual stimuli. The stimuli for VEP are delivered by a strobe light or a
screen with a checkerboard pattern. The electrodes measure the time it takes for the
eye to see the image and the nerve impulse to reach the occipital region of the brain.
It is important to keep in mind that these tests do not always give a conclusive result.
Mostly people with MS will show some lesions or areas of inflammation on a MRI but
there are still a small proportion of people whose MRI shows nothing at all. As with a
lumbar puncture, there are around 5% of people with MS with a negative result.
In summary, a diagnosis of MS is still undertaken through a medical history, clinical and
neurological assessment and judgment by a neurologist.
After diagnosis
After diagnosis, the neurologist will discuss next steps with you, including talking about
what MS is, and the disease-modifying therapies that may be available. The neurologist
will talk about symptom management, and introduce local and national charities who
can offer further support.
The neurologist will discuss legal requirements relating to diagnosis, such as ensuring
that you are aware you need to notify the Driver and Vehicle Licensing Agency (DVLA)
of their diagnosis.
The neurologist will write to you confirming your diagnosis, and also let your GP know.
If an MS Nurse is employed within the hospital, an appointment should be made with
them in the weeks following diagnosis.
Steps can be taken to manage your MS and treatment plans can help reduce attacks or
slow down the progression of the disease. You may be put in touch with an MS Nurse
and be given drugs that will help manage specific symptoms. Complementary therapies
are available through the MS Therapy Centres at various locations around the UK. Our
advisors will be happy to talk to you about the different therapies on offer.
Questions you may want to ask your Health Professional
Questions about MS
• Can you please tell me what the name ‘multiple sclerosis’ means?
• What causes it?
• Will it keep getting worse or can I expect it to improve?
• How is it likely to progress?
• What percentage of people have it?
• How serious is it and what can I do to help lessen my symptoms?
• Can I pass this on to my family or are they likely to develop it?
• What should I be aware of?
• Can I still go to work?
• Can I still drive my car?
• Will I need to go into hospital for treatment?
• How often do I need to see a doctor/neurologist?
• Are there any further tests I need to confirm the diagnosis?
• Are there any support groups or help for people with MS?
• What happens next?
Questions about medication
• How and when should I take this?
• Are there any foods that I should not take with this medicine?
• Can I drink alcohol with this medication?
• Will any other medicines be affected?
• Are there any activities I should not do whilst taking this?
• How should I store it?
• Are there likely to be any side effects/complications and what would they be?
• Can I reduce the side effects?
• Does it matter if I miss a dose and what should I do if that happens?
• Can you tell me about the medication, what it is and what it is supposed to do?
• How long will I be taking this for?
• If I feel ill on this medication, what should I do?
Questions about other treatments
• What other treatments are available?
• Can you explain how effective this treatment is compared to other treatments?
• What are the long term effects of this treatment?
• How can I tell if the treatment is working?
• What can be done if the treatment doesn’t work?
Further Information
McDonald Diagnostic Criteria
The McDonald criteria were devised in 2001 by a team led by Professor Ian McDonald,
and were most recently revised in 2010. The criteria are used to seek to establish
evidence of damage to the central nervous system (CNS) comprising of the brain and
spinal cord.
The criteria looks at the evidence of damage in two ways: is the damage ‘disseminated
in time’ – meaning, is there evidence of damage in the CNS at different dates and, is the
damage ‘disseminated in space’ – meaning, is the damage in different parts of the CNS.
The MRI, together with the lumbar puncture in some cases, provide the evidence to be
reviewed alongside the McDonald criteria to diagnose MS.
The criteria states that an attack or relapse must have lasted for at least 24 hours, and
must be neurological in nature that is typical of what is seen with MS. There must be at
least 30 days between the first attack and the subsequent attack to be counted as 2
separate events. These attacks may be seen clinically or on the MRI.
Recommended Diagnostic Criteria for Multiple Sclerosis
Clinical
Presentation
2 or more
attacks
Objective
Lesions
2 or more
Additional data required to make diagnosis
2 or more
attacks
1
Dissemination in space by MRI
None; clinical evidence will suffice
(additional evidence desirable but must be consistent with
MS)
Or up to two MRI detected lesions consistent with MS plus
positive CSF
Or await a further clinical attack involving different site to
1 attack
1 attack
2 or more
suggest dissemination in space
Dissemination in time by MRI
1
Or second clinical attack
Dissemination in space by MRI
Or up to two MRI lesions consistent with MS plus positive
CSF and dissemination in time demonstrated by MRI (i.e.
new lesion seen since the original MRI)
Or second clinical attack
0
(neurological
progression
is suggestive
of MS. This is
typical for a
diagnosis of
primary
progressive
MS
1
Positive CSF and dissemination in space by MRI
Or abnormal VEP plus abnormal MRI and dissemination in
time by MRI
Or continued progression for one year either retrospectively,
or ongoing
Source: Recommended Diagnostic Criteria for MS: 2010 revisions to the McDonald
criteria: Annals of Neurology 2011
Emotional reactions to a diagnosis
A diagnosis of MS is likely to make you think quite differently about your life. It is
normal to worry about what is going to happen, if every little twinge is another sign or
symptom, how the disease might progress and how it might affect your lifestyle. You
may also be concerned about the effect MS will have on your family, friends,
employment or hobbies.
You may find that your immediate concerns will naturally be about you and your family,
in particular:
1. Financial worries due to problems at work, especially if a relapse has occurred
and time off work is needed
2. Family and friends, including how (or whether) to tell them and how they might
take the news
3. Loss of social activity due to physical, mental or emotional difficulties
One emotion that should be considered when trying to understand your reaction to your
diagnosis is that of grief. Grief takes many forms; it is fundamentally about loss and
with regards to a diagnosis, it is about the perceived loss of many things that you may
have previously taken for granted in your life or fear you may no longer achieve.
Grieving can be very therapeutic if you give yourself time and consideration to adjust
and plan a new way of looking at life and dealing with any consequences of your
symptoms.
You may also react and feel in a way that is quite unlike your normal self. Be aware that
this may arise from MS related nerve damage in your brain. The brain controls your
conscious and unconscious actions and any damage to the frontal lobe (which is
responsible for the control of emotions and physical expressions) can result in you
acting in a way that you or your family and friends do not immediately recognise as your
usual self.
There is no right or wrong way to react to a diagnosis of MS, it is your MS and how it
affects you will be unique to you, even if it is initially not understood. All the emotions
you feel should be explored and discussed either with family, friends or if you need to,
with healthcare professionals.
At MS-UK we have a great deal of experience and understanding of MS. We know that
the point of diagnosis is a difficult time when life adjustments may be necessary and
when thoughts and feelings can be overwhelming. Managing that uncertainty can be
made easier by knowing where to go for help and by having someone to talk to. We will
provide emotional support and explain your choices so that you are provided with
everything you need to be able to choose the right pathway for you.
If you feel you would like some emotional support, we are here for you, but if you feel
that you need a qualified counsellor, then we can help signpost you to the right place for
your needs.
You can contact the Helpline on 0800 783 0518, by e-mail at info@ms-uk.org or via our
live web chat service – www.ms-uk.org
Updated June 2014