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Posted by CCF Neuro MD on April 07, 1997 at 21:41:20:
In Reply to: Cerebellar Atrophy & Palsy posted by Anonymous on April 07, 1997 at 21:39:04:
: For over 25 years now, have had a variety of diagnosis which finally was decreed to be Olivoponti Cerebellar Atrophy. Via
genealogy research, I discovered a great uncle who was diagnosed with Supraneuclear Palsy. Have also discovered
Auto-Immune diseases in this branch of the family. This week, I found this web site and realized that there were others who
had these medical problems. I would like to speak with someone who has Olivoponti Cerebellar Atrophy as well as anyone
diagnosed with Supraneuclear Palsy. By understanding what is happening to them, I may be able to get a reliable determination
of my exact illness. I have sent away to each organization for material on the diseases, but I really would like to contact and
correspond with someone who is actually experiencing the same problems I have. I have extreme palsy in my left hand, and
mild palsy in the right. I weave, stagger and fall and drag my right leg, especially when I am tired. I have been to Mayo,
Scripps and Evanston for neurological assessment and still am not satisfied with the diagnosis, which has varied from
Cerebellar Atrophy, to Parkinsons to Fetal Alcohol Syndrome, so you can see why I am still confused and uncertain.
You might try writing to the National Organization for Rare Disorders, at P.O. Box 48923, New Farfield, CT 06812-8923.
Ask for information for the Olivopontocerebellar atrophy organization. Hope you can contact someone to talk to.
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