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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