Stiff Person Syndrome: Want to connect with others

Posted by Suzanne Leaf-Brock @suzanneleafbrock, Jul 5, 2011

Am interested in connecting with people who have this or are significant others of people who have this condition. (I'm in the latter group).

Interested in more discussions like this? Go to the Brain & Nervous System group.

@pattygail

Dose any one have sps that can give some info

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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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@pattygail

Dose any one have sps that can give some info

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Anyone out there gave stuff person syndrome

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@pattygail

Dose any one have sps that can give some info

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That helps just to know someone else

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@pattygail

Dose any one have sps that can give some info

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What should I expect

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@suzieflynn

what meds are you taking?

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I am taking baclofen and just started diazepam this week. My insurance approved IVIG again so I am going once a month. This does slow the progression.

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@pattygail

Dose any one have sps that can give some info

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Hi from U.K. my husband had a stem cell transplant in March 2020 in India, has anyone else had this treatment? He is still on medication but definate improvement and praying he will get full remission, I know he would like to talk to others who have this condition, thank you 🙏

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@mandymcintyre

Hi from U.K. my husband had a stem cell transplant in March 2020 in India, has anyone else had this treatment? He is still on medication but definate improvement and praying he will get full remission, I know he would like to talk to others who have this condition, thank you 🙏

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Hi @mandymcintyre and welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion about Stiff Person Syndrome. I did this so you can connect with @pattygail @sandra319 @peggi @suzanneleafbrock @bryan_in_dallas and @hammere4,

Did your husband go to India for stem cell treatment because it is a treatment not approved in the UK?

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@maliakajeme

I just joined this mayo clinic connect. I have been struggling for over 2 years now since my car accident. I was diagnosed with fibromyalgia. chronic pain, and pelvic floor dysfunction. The other day my whole body from my neck to my ankles became stiff, so stiff I wouldn't move at all. I couldn't walk, turn my head, or flex any of my muscles without extreme pain going throughout my body. I had to call 911 and be transported by ambulance to the ER. When I was at the ER they said it was a withdrawal from my meds that I take for my Fibromyalgia and that it'll get better. I have had to use a walker and cane. I can't drive. I have trouble doing a lot of things. I have seen so many doctors over that years that I can't even keep count anymore. I scheduled any appointment with my pain management doctor and they said that this is weird and doesn't sound like fibromyalgia. They told me to go see my primary care doctor, I didnt a video visit with my PCP. He is concerned and referred me to physical medicine and rehab. That is all I cant say right now but after looking up my symptoms; Stiff person syndrome came up. So I am trying to figure out if I have that rare condition. I have tried physical therapy, chiropractic, water therapy, occupational therapy, massage, and bariatric surgery (to lose weight), Nothing had worked and I am at a stand still.

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@maliakajeme i am so sorry! I hope someone has some knowledge to help.

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@pattygail

Dose any one have sps that can give some info

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I just joined this mayo clinic connect. I have been struggling for over 2 years now since my car accident. I was diagnosed with fibromyalgia. chronic pain, and pelvic floor dysfunction. The other day my whole body from my neck to my ankles became stiff, so stiff I wouldn't move at all. I couldn't walk, turn my head, or flex any of my muscles without extreme pain going throughout my body. I had to call 911 and be transported by ambulance to the ER. When I was at the ER they said it was a withdrawal from my meds that I take for my Fibromyalgia and that it'll get better. I have had to use a walker and cane. I can't drive. I have trouble doing a lot of things. I have seen so many doctors over that years that I can't even keep count anymore. I scheduled any appointment with my pain management doctor and they said that this is weird and doesn't sound like fibromyalgia. They told me to go see my primary care doctor, I didnt a video visit with my PCP. He is concerned and referred me to physical medicine and rehab. That is all I cant say right now but after looking up my symptoms; Stiff person syndrome came up. So I am trying to figure out if I have that rare condition. I have tried physical therapy, chiropractic, water therapy, occupational therapy, massage, and bariatric surgery (to lose weight), Nothing had worked and I am at a stand still.

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@pattygail

Dose any one have sps that can give some info

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Hello @maliakajeme and welcome to Mayo Clinic Connect. You have had quite the last two years and, by the sounds of it, have seen several doctors looking for answers.

You will notice that I have merged your post into a discussion on Stiff Person Syndrome to allow you to go back and read through the information already shared by members such as @peggi @suzanneleafbrock @bryan_in_dallas and @hammere4.

You have certainly been diligent in advocating for yourself, however, this is a lot to keep track of for one person. I am wondering if the doctors you have seen are coordinating care between your visits? Do you happen to know?

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@sandra319

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.

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I thought SPS was diagnosed more by observation? I had GAD 65 test and results were high so since I do not have Diabetes, my neurologist ordered Lumbar Puncture so he could see the source of Ataxia. A Resident did the Lumbar Puncture but told me he got no spinal fluid (I am overweight and I am told that I must have Lumbar Puncture redone under Guided Fluoroscopy – that is where I am now). I have been diagnosed with Spinal-Cerebellar Ataxia – my doctor is looking for the source of the Ataxia. I have SPS as well. My doctor wants me to have IVEG after he examines my spinal fluid (after successful Lumbar Puncture under Guided Fluoroscopy).

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