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Suzanne Leaf-Brock (@suzanneleafbrock)

Stiff Person Syndrome

Brain & Nervous System | Last Active: Sep 15, 2020 | Replies (112)

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@bryan_in_dallas

Great question. The more I read about SPS, the more I think that might be the “undiagnosed autoimmune disorder” that I wrestle with; alone with osteoarthritis. I’ve actually seem 5 different neurologists, though, and other than confirming I have peripheral neuropathy, they’ve been no help. I believe two of the neuros specialize in autoimmune disorders. So I’ve basically stopped chasing the neurological side and continued seeing my rheumatologist.

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Replies to "Great question. The more I read about SPS, the more I think that might be the..."

Hi, all! My best friend has SPS and fell about 180 times during the 1st year. Head doc gave her baclofen and depacote and greatly reduced falls by 95%. BUT we found out that baclofen is highly toxic and was the reason for her experiencing terrible signs of dementia! It just toasted her brain. They cut the dose in half and now, 6 months later, she has her brain back!
What she should have received in the first place was a IVIG treatment (kind of washes the blood) and has now stopped having the spasms that made her fall. She is in a nursing home unable to walk (because she hasn't used her legs for over a year now) but will be starting physical therapy soon (as soon as stupid medicade kicks in).

STAY away from BACKOFEN!