Functional Neurological Disorder (FND) : a patient's guide
including Functional/Dissociative (non-epileptic) Seizures, Functional Movement Disorder and other functional symptoms
"I've tried everything, nothing helps"
If you've tried everything on this website and months later you are no better, what should you do now?
Not everyone with functional and dissociative symptoms improve.
Some people have a lifeling vulnerability to a whole variety of functional symptoms. 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 symptoms which you will have to learn to live with.
This 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.
Do not feel gulity 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 a functional disorder, 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. But how can you start to try to get better from something when you have no confidence that the diagnosis is correct?
This is when its important that your doctor is able to explain to you how the diagnosis has been made. It should have been made on the basis of positive features of the symptoms which are typical of functional or dissociative symptoms. Read the page on misdiagnosis if you want to read more about this.
You may decide that constantly visiting doctors and specialists and having lots of tests is actually making you worse.