In the first instance, talk to your GP about the symptoms you are experiencing. The GP can't make a diagnosis of MS, but can assess your symptoms and rule out alternative conditions that could be causing your symptoms. In May 2019, NICE (the National Institute for Health and Care Excellence) issued new guidance to GPs to help them identify people who may have a neurological condition and who should be referred to a specialist.
If your GP cannot rule out MS after the tests they have done, they can make a referral to an appropriate specialist. A neurologist specialises in nervous system disorders including MS, although not all neurologists are specialists in MS in particular. If your GP does not think your symptoms are due to multiple sclerosis, they may refer you to another specialist if they think it is more appropriate.
Find out more about the pathway to diagnosis and the tests that might be requested in our section on MS diagnosis.
The range of symptoms you may be experiencing can be overwhelming and it may be difficult to put across how they are affecting you.
Before the appointment, it can be useful to keep a symptom diary, noting:
- 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
It is also worth noting:
- 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
Preparing this information in advance can help you better explain the symptoms you are experiencing and may help you to get the most out of your appointment. You might like to prepare a brief summary of your diary entries. This should be on a single piece of paper, perhaps as a list or a table. You could give this to your health professional as an overview.
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. For example, MS can't be diagnosed from a blood test, but you may have some of these to rule out other possible explanations for your symptoms.
Understanding how your journey to diagnosis is going can be helpful during this period.
- 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.
You may feel stressed or run down from living with unexplained symptoms. If this is the case, talk to your GP about whether you can be referred to a counsellor to help you find ways to cope with living with this uncertainty.
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. Make sure you know which health professional to contact, should your symptoms change or worsen.
It is important to remember that some symptoms can be treated before your diagnosis is confirmed. Talk to your GP about what can be done to help you manage the symptoms you are experiencing now.