There is another site that gives more information.
http://www.neurosymptoms.org/

I am part of a working group of patients trying to work through the condition together and share our insights. The main difficulty being the fact that most neurologists and practitioners have no idea of the underlying causes.

However we have all improved be it to a greater or lesser extent. The main fact which has been common to us all is the "acceptance of the condition". Until this is done the individual hunts for alternative illnesses, chases endless tests, thinks they are mad and can become depressed or psychologically drained.

Once accepted you can try to work through just what is happening. Many of us seem to have had a "difficult past". Whether this has made us hyper sensitive well who knows. The thing to remember is that the condition is real, it can improve but we need to try hard to maintain as normal a lifestyle as possible. Easy to say, it certainly is not easy to do.

If we say we have Parkinson's or MS no one questions it, we are almost made to feel we are making it up. The social and often physical impact of this condition is equal to either.

What helps? I can say that for me Tai Chi and Qi Gong help my muscle movements. I meditate to try to calm my thoughts which used to run away with me. I was convinced I had all manner of ailments. Luckily I do not have the collapses/seizures that many do. For them having some form of external focus helps. Like having a small item in the pocket that they can take out and squeeze in the hand when the attack is felt building inside.

Then there are the general things that help us all. Exercise, good diet, keeping social contact, avoiding excess.

Do not expect things to change overnight but rather stabilising the situation first. It may take the help of some medication to combat the pains, bowel and bladder difficulties and yes the fatigue and depression. Then small baby steps to get the most from life.

I wish I had all the answers but this condition, from a medical point of view is in the early stages of recognition.

I wish you well.