Dear Marling
You describe amazingly exact the same heavy and unbearable symptoms which I too
suffered from. My reaction to them was the same reducing as much as possible
the sinemet and make the level of sinemet as constant as possible, but that
made things worse. It was dicussed at length on the list about half a year ago.
Your neuro says it is a DID reaction. Taking this serious and following the
recomendations that are made in the Harvard site:
http://neuro-chief-e.mgh.harvard.edu/parkinsonsweb/main/Drugs/ManPark1.html#TabO
fCont
has reduced my dyskinesia dramatically. I'll send this text and a few more to
your private E-mail.
Ida Kamphuis
PS Knowing now, when it comes, it will not last, I even am able to keep more or
less laughing during it. To feel one has some control makes a big difference.
You wrote
> This is serious. I spent 8 hours on my bed, unable to move on my own. Much
> of my body, legs and arms were moving, but not when I wanted them to. I was
> sweating terribly, and the contractions/cramps the worst I have ever
> experienced in my life. And most of all I had no control of any of it. I
> laid there and cried.
> I was suffering severe dystonia. I went to the neuro today. He said I have
> "DID", dystonia & dyskinesia from the Sinemet CR. I seem to be sensitive to
> it. At first I was on 50/200 3 times a day, then he cut it in half, 25/100 3
> times a day and now only 2 times a day, but I still am having trouble as it
> begins to take effect and when it wears off.
>
> Now he wants me to take Permax(Pergolide). We will be cutting the Sinemet to
> once a day and adding the Permax.
>
> I read the paper with the Permax. Now, I would like to know what it means.
> What can I expect? My neuro has talked of keeping the dopamine level even in
> my
> blood. He said that the Permax has a longer "half-life" than Sinemet? I do
> not
> understand this, and I do not know what it means to my body.
>
> Thank you for helping me with information and experience. Even though I have
> been taking Sinemet for nearly 2 years now, I am such a novice.
>
> don't forget how to laugh (I will keep trying)
> Marling McReynolds
> [log in to unmask] or [log in to unmask]
>
