thanks to all for the input on requip i appreciate it paula
----- Original Message -----
From: "charlotte A mancuso" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Monday, August 05, 2002 7:02 PM
Subject: Re: More ideas--Fw: Re: ALTERNATE DIAGNOSIS? ANY IDEAS?
> Hi,
>
> I haven't forgotten you--last 2 days not good--will give you a better
> reply soon--please understand that I am not a health professional but I
> pay close attention. Therapeutic dose of requip starts about 6-7 mg/day,
> which is more or less equal to about 1 and 1/2 mg of Mirapex per day --
> 1/2 3 t/day--I would start requip lower than 6--may just 1 3 t/day, but
> again I'm not the Dr. Mirapex and REquip both have starter kits which
> get you started slowly--why not do that--if it's too rough, as the Dr if
> you can adjust it and go more slowly--or you/she may be able to tolerate
> Requip or another agonist right from the start. Don't expect it to have
> much if any at doses lower than about 7mg/day, but Patience is the name
> of the game. That's all for now, but that's pretty much what I have to
> offer. Be glad to answer questions to the best of my ability and
> experience.
>
> good luck,
> Charlotte
>
> On Sun, 4 Aug 2002 17:16:29 -0500 patandpaula <[log in to unmask]>
> writes:
> > Charlotte, I am talking to my mothers dr about requip, would you
> > mind
> > telling me what is the lowest dosage to start out with? that way
> > she can
> > get used to it hopefully. i doubt if she will be affected with
> > diahreah, as
> > she has been severely constipated her entire life, so hopefully she
> > wont
> > have too bad side affects. thanks paula
> > ----- Original Message -----
> > From: "charlotte A mancuso" <[log in to unmask]>
> > To: <[log in to unmask]>
> > Sent: Sunday, August 04, 2002 5:13 PM
> > Subject: More ideas--Fw: Re: ALTERNATE DIAGNOSIS? ANY IDEAS?
> >
> >
> > > 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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