Bruce,

You have a real winner in Stanly Fahn. I've met him.. He is legendary!

As to Sinemet and dyskinesia.  Before my pallidotomy in Dec.'93 I was on
2800 mg of Sinemet CR, 14 of the 200/50 tablets,every day.  Was I
dyskinetic?  I needed a three foot radius circle.to move through so I
wouldn't hit any body or anything.

Medication practice has changed quite a bit since my two procedures - I had
DBS in Dec. '94 as well - so the following may be out of date or bad
practice.  I was facced with a reaal Hobson's choice: cut back on Sinemet CR
to eliminate the dyskinesia, which would immobolize me; or up the dose of
Sinemet CR to the point where I was fully mobile, which would exacerbate the
dyskinesia to the point of disabling incapacity.  There was no right answer
to my problem, only a pretty unsatisfactory tradeoff.

Followwing my pallidotomy and DBS, I'm back to four 200/50 CRs a day.

Hope the comments are useful.

Don't hesitate to e-mail me on or off list withany questions you may have.

Good Luck!

Cheers,

Bill
----- Original Message -----
From: B. Bruce Anderson <[log in to unmask]>
To: <[log in to unmask]>
Sent: Wednesday, July 19, 2000 11:52 PM
Subject: Dyschanesia/Sinement


> Hi all.
>     I was a participant in this forum from 1995, when I was diagnosed with
> PD, until last year, when I was told I don't have PD.  Well, the jury is
> apparently still out!  During that period of time I saw a total of 8
> neurologists, [including 6
> Movement Disorder Specialists] and 4 different neuro-ophalmologists.   I
> finally have found an MDS who seems a cut above the rest and is trying to
> find out what the heck I have - Dr Stanley Fahn at Columbia Presbyterian
in
> NYC. [I don't know if this is true, but my local GP told me the other day
> that one of his patients is Muhammad Ali.] Among other things, he ordered
2
> different kinds of PET Scans for me
> at North Shore University Hospital on Long Island.  Much to everyone's
> surprise, they showed evidence of  PD.  So he wants to try me on a higher
> dose of Sinement than I was on last year before I quit. The most I was
ever
> on was 800 MG per day, and it had no effect - he wants to try upwards of
> 1,500 to 2,000 MG/day.
> I am working up to that level gradually - right now I'm on 600 MG.
>     I just decided to try to use all the collective wisdom and experiences
> of
> this group to get a kind of second opinion on 3 matters:
> 1. Has anyone ever heard of anyone taking such a high dose - and being
> helped by it?, and
> 2. Do I have dyschanesia [the spelling ain't right, I know] to worry about
> with such a big dose or is that a result of just long term use?, and
> 3. The prescription says Take With Food, but I seem to remember a contrary
> rule on that - ??
> Thanks!
> B.Bruce Anderson
> Schooley's Mountain, NJ
> [log in to unmask]
>     {Some more details - IF anyone is interested - Dr. Fahn gave me a
> tentative diagnosis of Generalized Freezing Syndrome [aka Primary Freezing
> Disorder] - has seen only 2 other people with it.  He originally thought
> there was no way I have PD, because of my symptoms.  I am not exactly sure
> what he thinks now that the PET scan results came in. [an earlier PET scan
> at Mt. Sinai and an MRI showed no PD]. Dr. Fahn says he has ruled out PSP
> (John Hopkins) and MSA (Scripps Green in San Diego - after a 20 minute
> interview!), and he was "amused" by the Mt. Sinai diagnosis - they said I
> have a psychosomatic illness.
>      Symptoms:  I cannot speak at all anymore, I can't walk [rely on
> electric scooters and wheelchairs], I have trouble keeping my eyes open
> [Botox shots had no effect] and my mouth shut, and I have significant
> swallowing and chocking problems.  I have balance problems - tend to fall
> backward.  I have a rash between my eyes, and I have
> trouble rolling over in bed.  The only tremor I have ever had, a resting
> tremor in my left hand, went away back in 1996.  It doesn't sound like PD,
I
> realize, but [I realize this will sound blasphemous to most of you], but I
> am hoping it is!
>     I also am going to write to a number of MDS clinics to seek ideas.
> Thanks again!!}
>