Stiff Person Syndrome: Want to connect with others

@gary1316 I thought I would invite you to join the Mental Health Group if you'd like to connect with other members on the topic of Bipolar Depression since you shared how much pain it causes you. Please join the group if you are interested: https://connect.mayoclinic.org/group/mental-health/

I find your comment encouraging. While I do not suffer from physical pain, my bipolar keeps me full of internal pain because of the pain that I cause my best friend in life, my wife. It’s absolutely never intentional but it’s kind of like not intentionally running someone over with your car... it was an accident but they are hurt nonetheless.

I feel like I am clutching at straws here but I will literally try anything at this point.

I have found I am somewhat better if I do keep as active as possible. I do ordinary household chores, ride my recombent bike and I mow my lawn and work on my garden - weather permitting. I have found I get worse if I am not as active as I can be. I certainly cannot do as much as I did before I regressed. I do not have face pain or brain fog - I have very stiff posture and my feet shuffle as I haultingly walk, and my balance is very poor - I have to use a cane if I walk a long distance to keep from falling. I pray for Jesus to help me and He does, I don't know what I would do without Jesus - He is my strength and ever present help in time of trouble.

Hello @bdaniels7 and welcome to Mayo Clinic Connect. I understand you are interested in connecting with others who have SPS to find out if they get brain fog and if their face hurts, along with best tips for living with it.

You will notice that I have moved your post into an existing discussion on SPS in order to allow you to connect with members like @speechless623 @maliakajeme @estelatorres @pattygail @sandra319 @peggi @suzanneleafbrock @bryan_in_dallas and @hammere4 who may be able to provide you some information based on their personal experiences.

Of your symptoms so far, which has been the most challenging?

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