I have come late to this thread but have found it very interesting. One neurologist told me I had a psychologically induced movement disorder, after I spent a week in a neurology ward being treated appallingly
(and which left me feeling traumatized
). Later his registrar went as far as a doctor can to apologise for how I had been treated, muttered about atypical MS and suggested I not come back to neurology.
I became ill in 1968 when I took a summer flu. I was diagnosed with ME before CFS was invented and have all the classic symptoms such as sudden onset and high titres to Coxsackie B3 and B4 but my symptoms have always been mainly neurological with episodes of paralysis, lack of speech and, as a teenager, absence seizures. I could not stand still for any length of time, it was easier to walk than to wait for a bus, and I have the classic ME response to exercise of being able to lift a heavy bag once, but not a spoon to my lips over and over.
I became very disabled in my thirties, the technical terms would be kinesogenic and non-kinesogenic paroxysmal dyskinesia with dystonia and also periods of blindness that were most likely MS (I have acquired autoimmune diseases over the years such as psoriasis, frontal fibrosing alopecia and sjorgens syndrome, my immune system is really shot) I have been going to hyperbaric oxygen treatment since then which has stopped a deterioration and baclofen controls the movements enough to allow me to feed myself and not give my husband too many black eyes
Over the years I have come across a few people with ME who have developed paroxysmal dyskinesia and I became friendly with an MS patient who had it. She was told that there is a genetic propensity and her doctor felt that a person at risk will develop it if they get another neurological disease.
