How is someone diagnosed with MS?
MS in adults is often difficult to diagnose, so it may have taken a long time to get to a definite diagnosis. All the symptoms of MS are seen in other health conditions, so your doctors have to work out which one you have. This can mean having many tests to rule out other possibilities and then more tests to see if you have MS. It is sometimes a question of watching and waiting to see how your symptoms develop as this can help distinguish MS from other conditions. All this can be very frustrating and worrying but it is quite a common experience. There's no simple test for MS which can give you a 'yes' or 'no' answer like a pregnancy test. Neurologists have to take a multi-pronged approach and use their experience to decide if it's MS or not. Sometimes, it's impossible to be absolutely certain.
MS in children is still rare but does happen occasionally. As with adults, the process starts by visiting the GP for advice. The GP will then refer to the paediatrician who is an expert in child health matters.
Process of diagnosis
The first point of contact is the GP who will work through the symptoms that are present. This may take some time due to miscellaneous symptoms coming and going over time. If the GP suspects MS, (s)he will refer to the Medical Specialist Group for review by a consultant for further opinion. At this point, further more specific tests such as MRI scan or a lumbar puncture may be requested to aid the diagnostic process. If MS is still likely, you will be referred to the visiting neurologist to confirm the diagnosis. See the MS Management diagram for a full visual overview.
The process is slightly different for children. If MS is suspected, your GP will make a referral to a specialist child centre such as Great Ormond Street in London where you will see neurology teams and have tests and investigations. Once a diagnosis is made, then the local (Guernsey) children's service will manage and monitor care, linking in with the MS nurse as needed.
Take as much information with you as possible, as this will assist the medical staff to get a clear history. Here are a few things you may need to bring with you
- what symptoms you are experiencing and how long ago they started
- how often and when symptoms occur
- whether they come and go or are more persistent
- the severity of symptoms - this can be a simple scale such as 1 for good days through to 5 for bad days
- how the symptoms affect everyday activities
- anything that seems to trigger symptoms or makes them feel worse or better
- other health conditions that you may have
- any medication you are taking - both prescribed and over the counter
- medical conditions affecting other people in your family
It may take some time to find a diagnosis for your symptoms. You may talk to several health professionals and have a range of tests. Not all of these tests will be tests for MS. These tips may help:
- At the end of an appointment, find out what the next steps will be and what further tests might be tried
- If further appointments are needed, ask when can you expect these to happen
- Ask to be copied into letters between the consultant and your GP
- If you don't understand something ask the health professional to explain, perhaps in a different way
- If you are unhappy with the way the diagnosis is being handled, you can ask your GP to refer you to a different specialist for a second opinion. Although there is no legal right to a second opinion, requests are usually accepted.
It is sometimes a question of watching and waiting to see how symptoms develop as this can help distinguish MS from the other possibilities. All this can be very frustrating and worrying but it is quite a common experience.
If your health professionals are unable to give you a diagnosis at the moment, you should be able to agree a plan with them. For example, you might agree that a follow up appointment takes place in six months or a year’s time but with the option for you to get in contact sooner if you have significant new symptoms or become more severely affected.
It will be your responsibility to keep pushing for a diagnosis whilst acknowledging that this is not always straightforward and can take time.