Stiff Person Syndrome: Want to connect with others

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).

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?

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

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.

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?

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 🙏

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.

What should I expect

That helps just to know someone else

Anyone out there gave stuff person syndrome