The initial signs of multiple sclerosis (MS) can present with a variety of symptoms in different people at different times and the process of diagnosis can occasionally be a lengthy one.
There is no set pattern to the range and severity of the symptoms each individual will experience. Some people will be affected by symptoms that others will not and these can also vary from time to time, occurring in isolation or in combination.
Additionally, some people may experience milder symptoms, noticing slow, gradual changes in their physical condition with no obvious episodes. Others may have problems that are moderate or severe, taking the form of episodes or ‘relapses’ (a temporary worsening of symptoms).
It is also important to stress that some symptoms such as mobility changes are more obvious to the naked eye, while others are not, for example, fatigue or sensory disturbances.
Unfortunately, there is no single test or procedure that can be used to diagnose MS. Diagnosis is based on a number of factors such as a review of your medical history, neurological examinations and a series of tests.
Other conditions, which share a commonality of symptoms with MS, also need to be ruled out before an MS diagnosis can be confirmed. The diagnosis pathway can, therefore, be a process of elimination.
It is often a case of monitoring over a period of time to see if new symptoms appear or previous symptoms recur. This can prove frustrating for many as it can be hard to accept that a conclusive MS diagnosis can take months or even years.
The McDonald criteria are a set of guidelines that neurologists use to accurately diagnose MS, as it helps them to distinguish it from other neurological conditions. The first set of criteria was published in 2001 and it is updated regularly, with the latest version being published in 2017 (1).
The MRI, together with the lumbar puncture in some cases, provides the bulk of evidence to be reviewed during the diagnostic process, alongside the McDonald criteria.
We provide more detailed information about the McDonald diagnostic criteria on our website
www.ms-uk.org/diagnosis
Our ‘Is it MS?’ Choices booklet provides a summary of other conditions which have similar symptoms to MS.
www.ms-uk.org/choices-is-it-ms-content
The National Institute of Health and Care Excellence (NICE) guidelines for the management of MS include the steps medical advisors, such as GPs and neurologists, should take to reach, or exclude, a diagnosis of MS (2).
NICE states that the most common symptoms or ‘clinical presentations’ a person would visit their GP with are
NICE guidance also suggests that clinicians should be aware that these symptoms usually affect people with MS for more than 24 hours and they may have persisted over several days or weeks.
Initial symptoms may also include numbness in different parts of the body and other sensory disturbances such as twitching and tingling.
Our ‘MS Symptoms’ Choices booklet offers more information on the common symptoms associated with MS.
www.ms-uk.org/choices-ms-symptoms
If you are experiencing symptoms it is important to make an appointment with your GP to discuss them. It might be helpful for you to use a symptom diary as it can help you to gather information and show how symptoms can present when looked at together rather than in isolation. It can save time when visiting a GP for the first time. Rather than trying to explain what has been happening, it can help to share a diary.
Appointments with GPs or neurologists can sometimes be overwhelming, certainly when trying to discuss and explain how you have been feeling. It can be a difficult time talking about symptoms, and sensations, and trying to explain just how you feel. By writing down and describing your symptoms and how they affect you, whether it is a new symptom or one you’ve experienced before, you’ll have everything to hand. For example, when did the symptom start and stop, does it fluctuate, and do certain things make it better or worse, for example, heat, stress, or time of day?
Score how the symptoms affect you using a scale from one to five. A score of one means it doesn’t affect you much at all and five means it has an extreme impact. All of this information helps to build a bigger picture during GP and/or neurologist appointments
We have a downloadable symptom diary accompanied by a useful guide, available on our website. www.ms-uk.org/symptoms-diary
A GP will perform a number of blood tests to exclude alternative diagnoses, before referring you to a neurologist if MS is suspected.
The following is a list of tests which may be conducted, although not all of these may be required.
Once your GP feels that specialist neurological investigations are required, they will refer you to a neurologist.
Only a neurologist, a specialist on central nervous system conditions, is qualified to diagnose MS. A neurologist will perform specific 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 during which your full medical history will also be taken into account. Collecting your history is important as prior symptoms such as visual disturbances or numbness may have been treated or classed as something other than MS at the time. The neurologist will then perform simple tests to check movement, coordination, balance, reflexes and sensory compliance. The aim of these tests is to establish whether there are signs of the inflammatory process in the body.
If your medical history and neurological examination suggests MS, more tests will be conducted to look for further evidence. The neurologist will be looking for lesions on the brain and/or spinal cord. These lesions 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 MS. This is known as the McDonald criteria, which we mentioned earlier in this booklet.
NICE guidelines state that a diagnosis of MS should take into account a combination of history, examination, MRI and laboratory findings, and following the McDonald criteria (2).
Further tests that may be suggested by a neurologist are listed below.
A Magnetic Resonance Imaging scan (MRI) is used to identify any areas of the brain and spinal cord that may have scarring. An MRI scanner consists of a large doughnut-shaped magnet with a tunnel in the centre which, with the help of radio waves, is used to take pictures of the brain and/or spine. You will be placed on a table that slides into the tunnel. It is a painless procedure, although it can be quite noisy.
Timewise, the MRI scan can take approximately one hour, with more or less time required depending on the number of scans required. It can feel a little claustrophobic, but earplugs can be provided and you can contact the MRI operator at any time. The units are open-ended and some hospitals may provide MRI-safe mirror goggles that allow you to view the end behind your head, enabling you to see outside the unit, which can help relieve any feelings of claustrophobia. Sometimes a video screen is placed at the end of the unit, or a member of the medical team may be positioned there, both of which can be seen by using the goggles.
Additionally, it may be possible be sedated during the scan which can help relieve the impact of claustrophobia. To request this speak to your consultant well in advance of the date of the scan. Be aware that you will not be able to drive for 24 hours after sedation.
Occasionally a dye called gadolinium is used to enhance the image. The dye is injected into a vein before the MRI starts and can assist the neurologist to distinguish between new or ‘active’ lesions and older areas of scarring.
A lumbar puncture is a procedure where a small sample of cerebrospinal fluid (CSF), which surrounds and protects the brain and spinal cord, is taken and analysed for any abnormalities that can indicate MS, such as oligoclonal bands (OCBs). These are proteins known as immunoglobulins and they indicate the presence of inflammation in the central nervous system.
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. It may be performed as either an inpatient or a day patient in a hospital. You need to be in a hospital environment so they can monitor your health and rest will be needed for several hours after the procedure to allow your body to recover.
These are very simple, painless electrical tests that measure the time it takes for your nerves to respond to stimulation and are sometimes used in the diagnosis of MS. Visual evoked potentials (VEP) are most commonly used in the diagnostic process.
For VEP tests, a conducting gel and electrodes are applied to the scalp, specifically to the rear of your head, which is close to the occipital region of your brain. This is the area of the brain that is responsible for registering 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. The test takes around 30-45 minutes to complete.
It is important to keep in mind that these tests do not always give a conclusive result. Most people with MS will show some lesions or areas of inflammation on an MRI but there is still a small proportion whose MRI shows nothing at all. Similarly, with a lumbar puncture, there is a minor percentage of people with MS who will have a negative result
If you need to speak with someone, MS-UK has a trained helpline team that can offer emotional support and give more information and signposting on anything related to MS.
Contact our team by telephone free on 0800 783 0518, via live web chat (red button at the bottom right of your screen) or by email at info@ms-uk.org.
If you have been given a confirmed diagnosis of MS, it is important to access support and information that is not only reliable but also right for you. Our Choices booklet ‘Newly diagnosed with MS’ is a good place to start, providing information, tips and signposting that will help you in the early post-diagnosis days.
You can view our full range of Choices booklets and order hard copies to be delivered to your door, free of charge, on our website. www.ms-uk.org/choicesleaflets
We asked the MS community for their tips, hints and words of wisdom on the subject of diagnosis
(1) Sage journals. Multiple Sclerosis Journal. 2017 McDonald MS diagnostic criteria: Evidence based revisions. Published February 2018. Accessed May 2023.
https://journals.sagepub.com/doi/full/10.1177/1352458517751861
(2) National Institute for Health and Care Excellence (NICE). Multiple sclerosis in adults: management [NG220]. Published June 2022. Accessed May 2023.
www.nice.org.uk/guidance/ng220
