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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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@suzanneleafbrock

Hello, I work at Mayo Clinic and my husband was diagnosed here with stiff person's syndrome. The definitive diagnosis came from a blood marker they found. I can't think of the name of it at the moment, but if you have it, then you have stiff person's. I don't know why your neurologist referred you to oncology, but perhaps he wanted to rule out that there wasn't anything else going on. It is a very difficult disease to manage and lots of rest, lots of heat (wearing layers of clothing) seem to help Tony in addition to the medication. He went through plasma exchange and it did not help, they help some people but not others and there doesn't seem to be a reason why that is known at this time. Wishing you the best.

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Replies to "Hello, I work at Mayo Clinic and my husband was diagnosed here with stiff person's syndrome...."

I was diagnosed with SPS with the finding of an elevated GAD antibody (1,451), My antineoplastic antibody titer was negative, as well as a normal colonoscopy, a negative breast biopsy, normal full spine MRI, negative head MRI, and several referrals to vestibular rehab, a spine specialist….I think that’s all. I was not referred to an oncologist.