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Stiff Person Syndrome: Want to connect with others

Brain & Nervous System | Last Active: Jun 9 10:56pm | Replies (210)
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@hammere4

I was diagnosed at the Mayo three years ago at 21, the truth is no one knows what causes it and every medication I've been prescribed doesn't have effects for the stiffness or pain except benzos and pain killers. The disease gives you severe anxiety and depression because no one understands the feeling except the people that have it, which are few. Tramadol and Valium/clonazapam have been the best medications for me.

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Replies to "I was diagnosed at the Mayo three years ago at 21, the truth is no one..."
John, Volunteer Mentor | @johnbishop | Aug 7, 2017

Hello @hammere4, welcome to Mayo Connect. Thank you for sharing your story. I know it must be hard for others without stiff person syndrome to understand how you feel. I'm sorry that anyone has to go through it especially at a your young age. I would keep asking questions and searching for a better treatment to help you. You are your best advocate and there are a lot of Connect members that hopefully will be able to help you by sharing their story and what has worked for them.

I did find a research article from the National Institutes of Health from December 2015 - "Recent Advances and Review on Treatment of Stiff Person Syndrome in Adults and Pediatric Patients": https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4727915/

If you haven't already had the chance, you might want to read through the postings of the other Connect members in this discussion.

Hoping for a pain free day for you.

John

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