Stiff Person Syndrome: Want to connect with others

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

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.

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

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

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

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

yes

Hi @msdee004, welcome to Connect. We look forward to getting to know you. Do you have stiff person syndrome?