John:
Welcome to the group.
Could you explain the "tremor dominant PD" a little more compared
to"atypical essential tremor".
Which preceded the tremor or the typical symptomsof PD?
Is it considered one or two different diseases?
How long you had the tremors?
Was it entirely an action tremor or not sure?
There are so many variations in the diseae it isamazing.
I am 69 now.
In my case I had action tremor for the past 50 years, but facial mask
alone for the past 30 years.
But, in 2000 I was diagnosed to have PD on top of ET.
I have been prescribed seligeline, sinmet and mirapex for three
different doctors.
Two of the very well known doctors in the field tell me that I do not
have PD; but only ET with some mild symptoms of PD such as:
facial mask, postural instability, drooling, cramps or pain in calf
muscles, stiffness of calf muslces, slurred speech and decrease in the
volume of my voice etc. All these developments are very recent.
The latest verdict is that my PD symptoms are very mild, I am not ready
for any prescription drugs yet!
From the literature, I find CoE Q10 is the only factor with the least
amount of (if any) side effects, with most beneft.
I am sure you will learn a lot from this group. Hang in there. Dont
give up. But, be ready to give a good fight.
Raj
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----- Original Message -----
From: "John Sabato" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Wednesday, January 08, 2003 12:21 PM
Subject: JUST JOINED
> Hello All,
> I have recently been diagnosed with "Tremor Dominant PD" after
believing
> for 3 years that I had an "Atypical Essential Tremor". As it turns
out,
> all of the things that made my ET atypical are textbook symptoms of
> PD....so now I know.
> I just turned 44 a week and a half ago, I have a loving and
supportive
> network of family and friends. A job that I really enjoy, and lots of down
> time to garden, cook and write. So PD is the only thing that I have to
> complain about. But I figure why bother complaining, because I won't
make
> it go away, and it will just annoy everyone around me.
> I just started Mirapex ten days ago, beginning at 0.125mg three times
a
> day, and now up to 0.25. So far I have had very little problem with side
> effects, just a little queasy every once in a while for a very brief time.
> I would be interested in your experience with Mirapex.
> I have been seeing an acupunturist for a few months, every 3 weeks or
so
> (off schedule now because of the holidays), and taking some Chinese Herbs,
> which helped a great deal with my tremor initially. I have discontinued
the
> herbs until I can coordinate with my various practitioners to be sure that
> they won't counteract each other, I have an appointment this afternoon to
> take care of this. My neuro is a movement disorder specialist at UCLA,
and
> is very open to "alternative" therapies, one of which is "coenzyme Q10".
> CoQ10 has been in clinical trials and is believed to be effective in
> slowing down the progression of PD in the brain. Once I get settled in
to
> my dose of Mirapex I am seriously considering CoQ10, even though it will
be a
> considerable ($200 per month or so) expense, as it has yet to be approved
by
> the FDA as a drug.
> Any information or guidance that you can share with me will be
greatly
> appreciated
> John
> LA, CA
>
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