dystonia

[B & N Nothnagel <Nothnagel@xxxxxxxxx>]

i have dystonia on my right side from my neck to my toes.  especially
bad in my arm and wrist.  my neuro said she thought it might be caused
by the sinemet.

i tried an experiment and did not take my sinemet for a few hours and
went to physical therapy.  my theripist said my body was much more
relaxed and i had no pain.  then i took my sinemet and when it kicked in
so did the dystonia.

my neuro is slowly taking me off the sinemet and i am finding that my
balance and strength are going also.  i think the balance and strength i
get from the sinemet is going to be necessary so i will have to suffer
with the dystonia.

i should also mention that i have msa (multiple system atrophy) and use
a wheelchair most of the time and when i walk i have to hold on to
someone's arm.

i was on 35 ml liquid sinemet and now i am on 15 ml each hour and my
dystonia is much better but my balance and strength are not good.  i
wonder what it will be like when i am off it all together.

nancy