At 22:50 5-12-99 -0500, Greg Sterling wrote:
>>>>
Times I guess it is different for
everybody. Without sinemet I would never get any relief from my
dystonia. I have "wearing off" dystonia. Sinemet does not cause it,
but sure stops it.0606,0000,0000 Greg 47/35/35
<<<<<<<<
Greg,
I know how terrible "wearing off" dystonic dyskinesia can be. I did
suffer from them for many hours every day. However I did not know what
caused them. Till another listmember told me and I did read the Algorithm
of Management of parkinsons disease and learned from that how to change
my meds intake. The result was I had much more good hours. After a
pallidotomy I do now have it only during one or two hours in the
evening
and in one side of my body.
If it is really "wearing off" dystonia that you have, it is caused by
sinemet. That sounds absurd, because your experience is that it stops
when you take a sinemet. It is the same mecchanism which makes an
acoholic needs first in the morning a drink to be able to start up. The
same alcohol which poisened him in the eveninbg, is in the morning his
medicine.. I know now that it is not only rhetoric to say that,but that
the neurophysiological mechanisms of addicts with "abstinence" symptoms
are the same
as what happens in the brain of PDs with "wearing off". It is all about
glutamates, which are very important neuro-transmitters and are to active
in the addicts brain. My neuro told me that he used to try to wean people
with theses symptoms off leva-dopa an let them live on agonists. But my
Parkinson seems to be of a kind that it makes no senmse even to try.
Unlike alcoholics,not every sinemet- addict gets theses symptoms. You
belong to a minority. But knowing might make a difference.
Feel free to ask more
Ida
P.S read page 7 of the Algorithm about dyphasic dyskinesia (page of
J.Cottingham
Kind regards / Vriendelijke groeten
Ida Kamphuis
