Stiff Person Syndrome: Want to connect with others

Hello fellow members. I have recently been diagnosed with Stiff Person Syndrome. Anyone else get brain fog and your face hurts? And what are the best tips for living with it? Massage therapy help? PT and OT helpful? Thanks.

Hello @estelatorres and welcome to Mayo Clinic Connect. I understand that you have been diagnosed with SPS and are interested in finding some new ways of possibly stopping the progression of the disease.

I found this older discussion from within the community on this same topic that I want to share with you so you can review the member experiences and also the resources shared as a starting point.

-Stiff Person Syndrome:
https://connect.mayoclinic.org/discussion/stiff-person-syndrom/
Members who were present on that discussion include @mandymcintyre @pattygail @sandra319 @peggi @suzanneleafbrock @bryan_in_dallas and @hammere4 who have all discussed their diagnosis or that of a family member.

While we wait for other members to join, what do you do primarily to keep active and for workouts that you feel has been most beneficial so far?

I was diagnosed with stiff person syndrome back on 2010 . after many visits with different specialists and being misdiagnosed with ankelosing spondylites
and being treated for about a year for this condition, I had I flare up . then the treatment stop working . and when I ask the reumatologist how to prevent the falls that i was and still experiencing . she realized that i had other condition since, people suffering of spondylits do not fall. So I start again the process on finding out what was wrong with me. I was referred to a neurologist but after many MRIs and other studies he could not figure out what the problem was
He referred me to UCSF they did a blood test that was sent to the Minesota Mayo Clinic for the diagnosis. as of this day i havent received any treatment just valium which is not helping me and my condition seams to be progressing .I believe I have being able to manage the condition by being positive and keeping active working out regularly
Whaay Im seeking now is to find something else to help me with the stiffness and if posssible stop the progression of the disease

@speechless623 - I have no experience with IVIG treatment for stiff person syndrome but here are a few articles you might find helpful.

- "Most adverse effects are mild and transient including headaches, flushing, fever, chills, fatigue, nausea, diarrhea, blood pressure changes and tachycardia." - Safety of intravenous immunoglobulin (IVIG) therapy: https://pubmed.ncbi.nlm.nih.gov/17317619/

- (2019) New Thinking on Stiff Person Syndrome -- Or Is It Syndromes?: https://www.medpagetoday.com/meetingcoverage/aan/79664

- "Dec 22, 2015 — Stiff Person Syndrome (SPS) is one of the rarest autoimmune ... IVIG and plasmapheresis are either used alone or in combination in refractory ..." - Recent Advances and Review on Treatment of Stiff Person Syndrome in Adults and Pediatric Patients: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4727915/

John - Thank you very much for this information. My Doctor did GADS 65 test on me, results were high so he wants to do Lumbar Puncture so he can have Spinal Fluid tested to see where the Ataxia is coming from. Then he wants me to have IVEG. Do you have information on IVEG (safety, effectiveness-anything I should know)?

@speechless623 - Here is some information on how stiff person syndrome is diagnosed.

Excerpt from linked page... "A definitive diagnosis can be made with a blood test that measures the level of glutamic acid decarboxylase (GAD) antibodies in the blood. People with SPS have elevated levels of GAD, an antibody that works against an enzyme involved in the synthesis of an important neurotransmitter in the brain." - Stiff-Person Syndrome Information Page | NIH: https://www.ninds.nih.gov/Disorders/All-Disorders/Stiff-Person-Syndrome-Information-Page

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.