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I forgot to say--agonists are hard to get used to, but for me, they were
well worth it--try again slowly and stick with it--it may take 2 or 3
months. Side effects are a price you pay on the way to improvement,
within reason.  I was doubled up with cramps and diarrhia on Requip--I
got over it, and wouldn't give up my Requip for anything! Also, when I
got worse, I dropped Comtan--(Tasmar alternative, but not stored in
liver--no blood tests); Dr. had me go back on Comtan, increased my
Sinemet--(we were sparing simemet as much as possible so as not to
trigger dyskinesia)--and I improved, though I wasn't as advanced as you
describe your friend.  However, it seems to me that lots of mainstream
meds are not being tried--also he may be experiencing dystonia--the
turned in hand and curled fingers?--try Baclofen--it's an MS drug that
works for PWPs with dystonia.  I use it successfully for hand and foot
turning in and my toes going upward.  PWPs do get dystonia, and it worked
for me.

Good luck,

Charlotte Mancuso

--------- Forwarded message ----------
From: charlotte A mancuso <[log in to unmask]>
To: [log in to unmask]
Date: Sun, 4 Aug 2002 14:22:38 -0700
Subject: Re: ALTERNATE DIAGNOSIS? ANY IDEAS?
Message-ID: <[log in to unmask]>

Is he taking large quantities of vitamins containing vitamin A or
drinking lots of carrot juice? I believe too much and it will turn your
skin yellow/orange--one literally starts to look like a carrot.  A friend
of mine did this many years ago. And I think vitamin A is stored in the
liver.

My memory of this is a little sketchy. Katherine Holden:  can you weigh
in on this in case my memory is failing me?

Charlotte Mancuso

On Sun, 4 Aug 2002 13:03:19 -0400 WILL JOHNSTON <[log in to unmask]>
writes:
> There is a young onset PD man in our support group who has had PD for
> about
> 10 years for sure, probably longer (current age 51).
>
> He has been taking Sinemet for years, and it has usually been
> effective. He
> has taken various agonists in past years, and they produced
> undesired
> side-effects. He had a palidotomy about 5 years ago which produced
> favorable
> results for about 3 1/2 years.
>
> About a year ago he took a considerable turn for the worse:
>
> He was also taking Tasmar [and getting liver function tests from
> time to
> time which were uniformly negative for problems] when,
> over a period of about two weeks he gradually lost his ability to
> stand
> alone or  walk. The fingers on one hand curled  in, and the fingers
> will not
> extend out even with considerable force.  The changes seemed much
> too fast
> for PD, but much too slow for a stroke. He is still mentally sharp.
> When I
> helped take him for an MRI [no problems seen in MRI pictures], his
> arms and
> hands were yellow. [For those who can remember when oleomargerine
> was white
> and came with a yellow-orange dye packet: The color was just like
> the dye
> when the margerine was partly pale yellow and partly orangey - the
> orangey
> color.] I immediately thought juandice, but his eyes were very clear
> and the
> eyeballs were very white. {This symptom disappeared  in a very few
> days.}.
>
> There are deer and ticks in his yard.  I thought Lyme disease. Lyme
> disease
> is seen frequently in our area.  I understand he was tested for Lyme
> and
> test was negative.  The MD's are stumped?  Any ideas?
>
> Will J.
>
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