Stiff Person Syndrome: Want to connect with others

Great question. The more I read about SPS, the more I think that might be the “undiagnosed autoimmune disorder” that I wrestle with; alone with osteoarthritis. I’ve actually seem 5 different neurologists, though, and other than confirming I have peripheral neuropathy, they’ve been no help. I believe two of the neuros specialize in autoimmune disorders. So I’ve basically stopped chasing the neurological side and continued seeing my rheumatologist.

Thank you Sarah!

Hi, @sarah1000, and welcome to Mayo Clinic Connect. Appreciate your input. Do you also have stiff person syndrome?

@awinkler73 - will you share what other treatment options you and your doctor discussed at your appointment?

Hi there Bryan-
I'm sorry to hear about your health issues. SPS is a member of the GAD65 antibody autoimmune disorders.(SPS, Myesthinia Gravis, Sjogren's, CIDP, etc...) Many of these disorders have overlapping symptoms. You also may have more than one disorder. There are tests to figure out which one you have and treatment is different for each. From the sounds of it, you have an autoimmune issue that involves your central nervous system. You need to find an auto immune Neurologist . These will generally be at the major University Hospitals. They will be able to determine what issue you have and treat you for it. I wish you the best!

The this g you have to remember with this disease is that everyone is different. One treatment may work for me but may not work for you or whoever. The medication is one of the keys. Valium is a common med but it is not a long lasting drug so you end up taking it more often than normal and become addicted. Clonozapam lasts longer so it isn't as dangerous in that aspect. Gabapentin is another along with baclofen. I also take immuran

I've been on IVIG for 2 years and they have slowed progression to an extent. Have discussed other options at the last appointment.

It's a tough condition. Has IVIG helped?

I was duagnosed3 years ago. Have been on Ivig I fusion of gammagard for 2 years. The doctors think I've had this for 12 plus years. Any questions just ask.

Hello, I was sent a link to this thread, in a reply to another thread on undiagnosed autoimmune disorders. Until today, I’ve never heard of SPS, but so many of my symptoms are stop on with what’s been mentioned above. When I Googled for SPS, the site I found said muscle spasms (some bad enough to break bones) are a primary symptom. I definitely don’t have that, other than some muscle twitching every few days. If any of the previous posters happen to read this, will yo please tell me if you or your loved one with SPS has this type of muscle spasms. Without that element, I have the chronic daily pain, balance and anzxiety issues, etc, that I’ve read above. Thank you. Bryan.

Hi @mrsbv you may have noticed I moved your post to this existing discussion on stiff person syndrome, per @johnbishop's suggestion, so that you can connect with others with similar experience.

I wanted to thank John for responding and sharing the website where you may be able to find a specialist.

Thank you for sharing your story. How are you symptoms nowadays?