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:
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.
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.
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:
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:
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.
The McDonald criteria was first introduced in 2001 to allow accurate and timely MS diagnosis and the latest revision was made in 2017, based on latest research.
This criteria allows earlier diagnosis to get treatment access.
MRI evidence is used extensively to look for lesions and an MRI is encouraged if MS could be a possibility. A lumbar puncture is another key diagnostic tool as the presence of oligoclonal bands in the spinal fluid is a marker for MS. This shows that there has been disease activity in the past. You may have both or just one. This evidence is then compared with the McDonald criteria to diagnose MS.
The key requirement for MS is evidence of damage occurring at different times and to different parts of the central nervous system. However, doctors still need to use clinical judgement, e.g. diagnosing MS in children or populations where MS is uncommon
In this video, Dr Jonathan White explains magnetic resonance imaging (MRI) scans, and how useful they can be in assessing the severity and progression of relapse-remitting multiple sclerosis (RRMS).
Unlike many other diseases, there is no single test that can definitely determine whether or not someone has multiple sclerosis. Also, the common symptoms of MS (such as pain, fatigue, depression and more) can be both hard to accurately define and are symptoms of many different diseases. Doctors may use a variety of tests to eliminate other similar conditions.
The following methods can be used to help determine whether someone has developed MS or not:
Being diagnosed with multiple sclerosis can be very difficult, but it’s important to remember that you can manage your symptoms, and you are not alone. Following the Overcoming MS program can have a very positive effect on quality of life, and we recommend start it as quickly as possible. In the short term, you could also consider: