Stiff Person Syndrome

Posted by pattygail @pattygail, Nov 22, 2016

Dose any one have sps that can give some info

Liked by JustDoc

Hi, @hammere4, and welcome to Mayo Clinic Connect. I am glad you have joined us here.

Sounds like you’ve been through a challenging time trying to get the best medications for your condition.

I thought I’d ask if @nan45, @suzanneleafbrock, @pattygail, @lora, @shellwil, @twirlgirl101, and @judiff, who have discussed Stiff Person Syndrome previously, might have any thoughts to share, especially about the emotional effects of few people understanding this disease, due to its rarity?

I am sorry to hear about the anxiety and depression. Can you tell us more about what you’ve been experiencing with these?

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Hi, I think my husband does not expect others to understand. He sometimes tries to explain it, but it seems people just don’t get it or they forget. So for the most part, he doesn’t expect people except his immediate family to truly understand. I think he chooses to just carry on as best he can and avoids much conversation about the disease or its impact, emotionally or physically. That probably doesn’t help much, but that is what I have observed in his situation.

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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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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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I also do Nero Feedback and it helps with pain

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@sandra319

Does anyone have stiff person syndrome? If so was oy diagnosed with gad65 blood test ?

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yes

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Any treatments that have worked im still waiting for infustion treatemen

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@suzieflynn

Any treatments that have worked im still waiting for infustion treatemen

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Hi @suzieflynn, please click this link https://connect.mayoclinic.org/discussion/stiff-person-syndrom/ and join the discussion with other members talking about stiff person syndrome like @sandra319 @peggi @suzanneleafbrock @bryan_in_dallas and @hammere4,

@pattygail asked some of the same questions you're asking about what to expect and treatments options. Suzie, when will you be getting infusion treatment?

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Anyone out there gave stuff person syndrome

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That helps just to know someone else

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What should I expect

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