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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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@lisalucier

Hi, @njgenevieve – I'm sorry you feel you're in the twilight zone and you're experiencing some bouncing from one specialist to another. Hoping that one of your doctors can indeed point you in the right direction.

Some of the other members in this discussion may have some ideas on to whom or to where to go now with your stiff person syndrome treatment, like @suzanneleafbrock @msdee @nutmeg @maritakelly @pollyanna777 @ndville and others.

Have you had the chance to follow up with the hematologist/oncologist?

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Replies to "Hi, @njgenevieve - I'm sorry you feel you're in the twilight zone and you're experiencing some..."

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.