If you have tried everything on this website and months later you are no better, what should you do now?
Not everyone with FND improve.
Some people have a lifeling vulnerability to a whole variety of functional symptoms and disorders. It seems as soon as one symptom gets better another new one comes along to replace it. This kind of situation can be particularly demoralising for the person who has it. They often start to feel like a ‘hypochondriac’ because they are always at the doctor, and the tests are usually normal.
If your doctor and other health professionals have tried their best, and you have tried your best, then it may be that you have chronic condition. Then the priority might be to find ways to live the best life you can, emphasing quality of life above everything else.
Just because you have had symptoms for a long time does not mean that you will always have these symptoms, as you get older they may fade in to the background.
Doctors sometimes find it hard to explain this to patients. They sometimes think that because there is no damage that patients should always improve. This isn’t true.
We did a study in Edinburgh that was one of the longest follow up studies ever carried out in people with FND causing limb weakness.
When we contacted people 14 years after diagnosis a lot of them still had the symptom.
51% had improved or recovered limb weakness(20% completely recovered)
23% were the same
14% were worse
Do not be hard on yourself that you have found it hard to improve. Your GP may want to make an arrangement with you so that you see them at preplanned intervals to monitor how you are doing. It might be important for example to optimise any medication and monitor your general sense of wellbeing.
In a very small minority of patients (less than 5%), the reason they havent improved may be because the diagnosis is not correct. Whilst it may sometimes be important to revisit the diagnosis, for the vast majority of patients, repeated and frustrated attempts to look for an alternative diagnosis, when they already have a correct diagnosis of FND, can also be highly damaging. For many people, such repeated investigations or consultations are one reason why they have not made any improvement. Its understandable why patients should feel as if their symptom must be due to a disease such as multiple sclerosis or Parkinsons disease, particularly when these are disorders that everyone has heard of.
Living with long term symptoms is hard. Are there support networks near you for people with neurological or other long term conditions? You may find services that help you live the best life you can.
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