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MS diagnosis: The full guide

Initial MS symptoms can be difficult to attribute to MS. Your doctor will use the McDonald checklist to confirm an MS diagnosis. We explain how you can live well after diagnosis.

Being diagnosed with multiple sclerosis is often life-changing. Before we look deeper at its diagnosis, let’s remember some key stats about MS:

  • 2.8 million people worldwide have an MS diagnosis
  • 75% of an individual’s risk relates to environmental and lifestyle factors
  • Over 150,000 people are living with MS in the UK today
  • 1 million people are living with MS in the US today
  • 85% of all MS cases are Relapsing Remitting MS (RRMS)
  • 3x more women than men are affected.

The McDonald criteria & MS diagnosis

The McDonald criteria is a tool used by clinicians to provide an accurate MS diagnosis. The first set of criteria was published in 2001 and it is revised regularly by a panel of MS experts with up-to-date data. The aim is to give an MS diagnosis as early as possible to give you access to the right treatment quickly.

The main observation for an MS diagnosis, setting it apart from other neurological conditions, is the evidence of damage to the central nervous system (CNS) in different places (Dissemination in Space – DIS) and at different times (Dissemination in Time – DIT).

When you visit the doctor with neurological symptoms that could be a first indication of MS (CIS), you will often have an MRI scan and lumbar puncture. The McDonald criteria advise that every person receives an MRI scan as part of the diagnosis, as lesions can even be found in someone with no symptoms (radiologically isolated syndrome).

Another sign of MS within the criteria is the presence of oligoclonal bands in the spinal fluid, (immune system proteins that show inflammation within the brain and spinal cord) which is evidence of DIT — MS activity in the past.

With this evidence, you do not have to wait for another relapse to start treatment.

What is the average age of MS diagnosis?

The average age of MS diagnosis is 34 years, but teens and children can also get diagnosed.

Early symptoms and signs of MS usually begin between the ages of 20 and 40. If MS is diagnosed between infancy and 18 then it is called paediatric MS, and this is much less common.

When MS symptoms are first noticed after the age of 50, it is known as late-onset MS. In cases like this, it can take your doctor longer to diagnose, simply because it is not so common.

What to expect after an MS diagnosis

There are no wrong or right responses to an MS diagnosis and your feelings can change from morning to night.  Some people feel relieved (if you have been desperately seeking an answer to worrying symptoms), you might also feel anger, sadness, loneliness, denial, guilt — all these feelings and others are completely normal.  Sometimes you might even feel nothing at all — a sense of numbness — and this is OK too.

The main thing is to ensure that you deal with this diagnosis in your own time and at your own pace. When you feel ready, the Overcoming MS community is there to help you. You can talk to others who have received an MS diagnosis, to support each other in taking back a sense of control over your health and making positive lifestyle changes to feel better.

If you feel like you are struggling to cope with your diagnosis, make sure that you tell your GP, as they may be able to refer you to a counsellor who will be able to make a positive difference.

As MS varies widely from person to person, what to expect next will depend on various circumstances:

  • What type of MS you have and the symptoms you may be experiencing.
  • The support and availability of your MS team.
  • The people you have to tell — any companies which have issued you insurance and the driver’s licensing authority, if you drive. You may also have to tell your employer straight way if your role demands a certain level of fitness or eyesight i.e. the military or the driver of a heavy goods vehicle.
  • What you want — there will be decisions that you can make regarding your treatment.

For the first appointment after your diagnosis, you might like to take a family member or friend with you for moral support. Before the appointment, note down any questions that you may have as you think of them, as it can be difficult to remember everything on the day, especially if you are feeling anxious or upset.

After you have had MS confirmed you can also start to:

  • Consider all the different treatments available, such as medication, lifestyle changes and physiotherapy.
  • Ask your doctor about disease modifying drugs.
  • Look after your mental health as well as your physical health with meditation and yoga and complementary therapies like reflexology.

How Overcoming MS can help following your diagnosis

If you have been recently diagnosed with MS, Overcoming MS can help by supporting you to follow an evidence-based lifestyle to improve your health outcomes.

Support from the Overcoming MS community

It often helps to talk to others who have also received an MS diagnosis so that you don’t feel alone in your situation. You can join the Live Well Hub and join an Overcoming MS Circle where you can ask the community questions, share stories and encourage each other. You can also listen to our Living Well podcasts where the Overcoming MS community share positive stories to inspire others and discuss questions you may have.

Providing a new life path

Following the Overcoming MS Program will improve your general health and wellbeing for the better, not just your MS symptoms.

You will also meet people who enrich your life who you might not have otherwise met.

Life doesn’t stop at diagnosis, there are some choices that you can make to feel better and lead a full life and our Overcoming MS team are here to support you.

Overcoming MS pattern

If you or someone you care about has MS, make sure you sign up for you monthly updates for tips, recipes and resources about how to live well with MS.