My new Neuro has put my condition down as 'dystopia Parkinsonism' - this doesn't seem to me to be good news!!
Anyone else been diagnosed the same ???
hello moon and stars,
yes, parkinsonism bad enough without dystopia, did they mean dystonia? I don't have this, but hope someone else here will know more. If it was dystonia, there's the dystonia society at dystonia.org.uk and a phoneline 0845 458 6322, all best
rhubarb
Thats interesting, i didnt know about that, I was diagnosed with dystonia when i was 18 which causes full body paralysis for approx 2 weeks at a time, now I usually tend to get partial paralysis more often, what kind of symptoms do you get moonandstars? Ive had a constant tremor only in the last year (im 28 now) and have had other PD symptoms for a few years now, still trying to get a diagnosis. I hope there are meds or something else that can help you
Hello moon and stars rhubarb and suzy
Yes unfortunately DYSTONIA is one of parkys pals and in my case this evil ambassador of PD takes over while he (PD) IS on a coffee break,, inflicting unbearable agony in my neck (sitting) and my lower back (standing) and is impeccable in its timing cutting in when enjoying ,,well anything enjoyable really,,no no not that, thats a distant memory for me, even the infusion of parrotseathemall,,(paracetemol) has no effect and as thats the only pain killer I can take I can only lie down if I need relief which raises eyebrows in restraunts must go now as have booked a seat at the Italian restraunt.????????????
BFN FED
hello suzy
what have you been given to combat the dystonia and tremor
im shocked that you are still without a dx
do other dystonia patients have constant tremor, maybe thats a clue
have you found the docs think you are think you are making it up or its psychosomatic
both symptoms are very debilitating and painful its not right that you are in limbo like this
regards
L