Different parkinsonisms


#1

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 ???


#2

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

 


#3
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

#4

cool

            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


#5

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