Charlotte,
I had extremely bad dystonia pain in my right foot and terrible
dyskenesia all the time. I had DBS three years ago and now have no dystonia
and very little dyskenesia (only when I over-medicate). I hope this tid-bit
helps you.
Paula from PA
----- Original Message -----
From: "Charlotte A Mancuso" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Sunday, November 02, 2003 2:51 PM
Subject: Re: Atypical PD?/Dystonia and PD
> Ray and others,
>
> Can you tell me more about Dystonia and PD and/or DRD--Dopamine Responsive
Dystonia? I'd be very interested in hearing from others with PD and
dystonia.
>
> I have PD symptoms with intention tremor rather than resting tremor, and
have dystonia as well, which is one of my biggest problems along with
slowness, some shuffling, rigidity, and lack of dexterity-balance is really
good. I take Baclofen for the dystonia, which helps quite a bit, and I take
Sinemet, which has never given me that big bang either--takes a long time to
work and doesn't work for very long, but I do need it. I've given up
agonists--and in some ways I'm better off for it and worse off in other
ways.
>
> I'm really frustrated with Drs. as well. What would I do without this
list!
>
> Thanks much,
>
> Charlotte Mancuso
>
>
> Rayilyn Brown <[log in to unmask]> wrote:
> Judith,
>
> PD meds don't seem to help me either. I've just had bilateral DBS brain
> surgery in subthalmus nucleus and it really helps tremor, but other things
are
> atypically worse, like walking and speaking
>
> I don't have DRD (Dopamine Responsive Dystonia)(DBS is now done on the
globus
> pallidus "sp"?for dystonia) and was only "ON" the first time I took
> Sinemet. Told my neuro I have never gotten the "Big Bang" out of meds like
most
> people do. she conceded I was a "weird duck", but believes I do have PD as
I
> have every syjmptom except facial mask and and PET scan which supports the
> diagnosis of idiopathic PD. Am going for another programming hopefully
next week.
> She even asked me what I thought I had. It is very discouraging.
>
> Ray
>
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