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Dose any one have sps that can give some info

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Hello @pattygail, welcome to Mayo Connect. If you click on the magnifying glass (search) at the top of the Connect screen and type stiff person syndrome you can bring up all of the discussions/posts on the topic. @nan45, @lora, @shellwil, @twirlgirl101, @judiff are you able to provide any information on SPS for @pattygail? Here are a few sites I have found with information on the autoimmune disease:
Can you provide any more details on the information you are looking for?


I’m looking for what I can expect from sps what my life is going to be

Hello @pattygail, I’m hoping others with the condition will answer your question. I have found a few sites that may give you the information you are looking for. CNN had a story in 2014 on stiff person syndrome – http://www.cnn.com/2014/02/05/health/stiff-person-syndrome-irpt/. There is also a site that provides the progression and stages of SPS – http://thetinman.org/progressionandstages.html. Please don’t give up hope!

I wanted to let you know that I do nurofeedback and it helps with pain

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

I was diagnosed a few weeks ago with two gad 65 tests that were higher than 250. The doctor spoke to another who had done iag testing and that was .93 sent to Mayo Clinic now my doctor wants me to do iag testing. I have all the stiff person. Symptoms. Stiffness tripping startle easy stress sets it off. My ivig is on hold I was due to start Monday. He wants iag test done. He ordered 2 gad 65 now is waffling.

yes it was with the blood test and spinal tap I have been diagnosed for about 7years

Best wishes to you

Dropping things stiffness tremors falling chronic pain high gad 250 plus can’t walk or sit long etc.

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.

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?

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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