back in Ireland

CK remain high and the doc in london suggested i be tested for neuroacantocytosis which my twin has looked up on the internet. I havent and wont. Too scared. I was told to have acantocyte blood film tests three times. The first shows nothing, thank god but I am still in the same situation as when I went to London.
Received the letter the london doc sent to my dublin doc and its vague in diagnostics and does not say I have parkinsons cos symptoms are different to twin but he told me personnally I DO have a NM disorder.
My muscles are agony and my walking even worse since coming home and I seem to be very very weak and tired. The crohns is also active again so I have upped the steroids.
I am unsure where this has all got me. I DO NOT want this rare condition nor parkinsons but it is deffo I have something.
The 'jiggers' are driving me awol and so is the dystonia.
I am very very exhausted all the time.
I spent the best part of 30plus years on heavy doses of anti-psychotic drugs and I am wondering if I have a tardiv dyskinesia cos of these psychotropic drugs. I was given an apology for ever being in the psych system and I was deemed perfectly sane by two independent psychiatrists and havent taken psych drugs for at least 4 years.
I have been brousing 'Toxic psychiatry' and these drugs do cause parkinsonism and affect the basal ganglia and ~I have tested pos on the DAT scan for early stages of parkinsons even though neither dublin neuro or london neuro will commit to this diagosis cos of non-classic symptoms.

Daily I get worse and I dont know what to do really. I was lmeasured for a wheelchair last week.....
xx Ann

would the doc in Ireland be reluctan to point the blame on antipsychotic drugs cos his dad was a consultant psychiatrist? Rate of effect of neuroleptic drugs can be as high as 70% of long term users and I certainly was that but, now's the catch, I didnt show any adverse sighns of drug induced tardiv dyskinesia when taking them but the book says here that the drugs can do this too in some cases and it is only when you come off the drugs that effects begin to show.
It also mentioned inability to maintain body temperature control and overheating both of which I have extreme difficulties with. Also mentions some effected have difficulty staying away from drinking water and I now have an extreme need for water, in the book it said it can get as bad as the person dying from drowning, but I'm not that bad but if I do not have water when I need it, say in the middle of the night it can be quite painful and when I dring the water I cant get enough of it and drink in mad frantic gulps but it does stop with a full glass and I am then satisfied.
I am still wondering about all this. I am just perplexed as hell. Either way no one would admit to it being the drugs considering my twin who never was on em has parkinsons and there is a higher risk for me due to that fact.\bed now.
xxann

Ann,I hope the Docs get to the bottom of your problem.Not knowing is the worse scenario.I'm sure everyone on this forum has been thru that,as PD is such a difficult disease to DX.With everyone showing different symptoms it must be a neurologist nightmare.Stay positive,and don't let things get you down.Remember you got to keep stress at bay.Stay well you are in our thoughts and prayers.Ed