Stiff Person Syndrome: Want to connect with others

Good morning and welcome to Connect..Here is a discussion group about Stiff Person Syndrome (SPS). What is the infusion that you will be getting? Is your physician a rheumatologist?
I, too, felt alone when I got my diagnosis because no one in my town had even heard of it. My brother in law, a toxicologist, sent me an article from a neurological journal that I made copies of and gave to doctors. Never hurts to do research and be your own advocate. I’m sitting here now, getting my infusion of rituxan, my wonder drug!
https://connect.mayoclinic.org/discussion/stiff-person-syndrome/?pg=7#comment-388249

@suzieflynn here is another website that may help you. Stay strong
https://my.clevelandclinic.org/health/articles/6076-stiff-person-syndrome

Does anyone know what my path moving forward is going to be? Im going to do infusion and a muscle relaxer. My doctor has never treated this. So I feel Im on my own. Thanks

Hi @suzieflynn and welcome to Mayo Clinic Connect. I look forward to getting to know more about you. What treatments have you had or medications do you take for stiff person syndrome? Do you fall frequently?

yes

Hello @colleenyoung My mobility varies from day to day. I need assistance walking in any open spaces. I wish I could say I do something to help maintain mobility but I basically try to make it through the day without having to hug the wall or asking for someone's assistance. It is purely stiffness that makes it unsafe for me walk for fear of falling. I have range of motion in my legs when I am in my home, I do stretches in the morning and at night. And I do this because it makes me feel good not so much for mobility. I have not had a lot of guidance with managing this disease accept for medication. I was trying IVIG until my insurance denied because of lack of randomized clinical trials. I have not had it in over 18 months. IVIG seemed to help me at lower doses to return to my normal.
I appreciate you inviting others into the conversation.

Hi @michellewi and welcome to Mayo Clinic Connect. I see that you've been living with Stiff Person Syndrome since 2012. I'd like to bring in fellow members @peggi @hsmith801 @suzanneleafbrock @speechless623 @njgenevieve and @aknitag into the discussion. Peggy and Suzanne may be able to suggest SPS specialists in the Wisconsin area.

Michelle, you mentioned trouble walking. What are you able to do to maintain mobility?

Hello @hsmith801
I have the exact same symptoms you do. With an extremely high GAD 4350. I was diagnosed in 2012 and my symptoms have progressively gotten worse but I do not suffer from painful spasms and cramping is minimal. My main issue is difficulty walking. Stiffness, muscle weakness. I would suggest treating it aggressively now and not waiting till later. I am not a doctor that is just my opinion.

Hello @peggi
I am from Wisconsin also diagnosed with SPS in 2012 and I am getting progressively worse. I currently go to SSM Health. Would you be willing to share who your doctor is at UW? My insurance covers both. I am looking for a specialist not just a neurologist. Thank you, Michelle

Hello @aknitag, welcome to Mayo Clinic Connect. Thank you for being a strong advocate for your husband's health and searching for answers. It's good to hear that he has good days along with the bad ones. I'm hoping someone more knowledgeable about stiff person syndrome can provide some information on your question is it related to other brain disorders. It does seem like it's likely but I have no medical background or training. Here are a few links that may provide some answers for you.

Stiff-Person Syndrome Information Page -- https://www.ninds.nih.gov/Disorders/All-Disorders/Stiff-Person-Syndrome-Information-Page

9 Studies found for: Stiff-Person Syndrome -- https://clinicaltrials.gov/ct2/results?term=Stiff-Person+Syndrome

Have your husbands doctors suggested any other treatments or therapy?