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PARKINSN Archives
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shy drager syndrome - SDS/MSA multiple system atrophy
progressive supranuclear palsy - PSP
It is like being on fast forward in slow motion, if that makes any
sense.
nm
Rayilyn Brown wrote:
>
> To all of Deborah's friends and supporters on this List:
>
> I talked to Deborah about an hour ago and she has been misdiagnosed from the
> beginning. According to Dr. Levesque at Cedars Sinai, she does not have
> Parkinson's Disease, but either Supranuclear Palsy or Shay-Drager/MSAP,
> striatal nigra degeneration (her brain stem cell is definitely dying, as you
> may know (please forgive me if I get these appellations wrong). I'm sure
> some of the experts on the List can correct me, plus a whole host of other
> problems. This Dr. was VERY thorough. They were there about 3 hours.
>
> Anyway, she is not a candidate for the brain stem cell procedure for
> Parkinson's Disease. She has to have another brain scan done soon at Emory U
> in Atlanta. so a definitive diagnosois can be made. If she does not have
> Dudley Moore's disease she may be the one candidate for using her own brain
> cells (no guarantees) for the other condition, MSAP< I think, but it won't
> help her brain stem cell deterioration.
>
> She is exhausted and does not want more invasive procedures, but may change
> her mind when the final diagnosis is made. So it is not A or B as Robert
> hoped, but much more complicated, A<B<C<D<E&F.
>
> Dr. L's office was flooded with emails and petitions and faxes. She and
> Robert appreciate your support, but they have a very difficult road ahead.
> When they return they will correct any misrepresentations or errors I have
> made. But I thought that all of you who signed the petitions and emails
> would like to know how she fared.
>
> She and I will no doubt continue to scream, rant and rave...trying to get
> some attention and someday help for all those who suffer.
> Rayilyn
>
> ----------------------------------------------------------------------
> To sign-off Parkinsn send a message to: mailto:[log in to unmask]
> In the body of the message put: signoff parkinsn
----------------------------------------------------------------------
To sign-off Parkinsn send a message to: mailto:[log in to unmask]
In the body of the message put: signoff parkinsn
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