Stiff Person Syndrome: Want to connect with others

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?

Hello @mrsbv, Welcome to Connect. There is another discussion for Stiff Person Syndrome where I think your post will receive more visibility. I'm tagging our moderator @ethanmcconkey to see if we can move your post to the following discussion where you can meet other members with similar symptoms who may be able to share suggestions with you.

> Groups > Brain & Nervous System > Stiff Person Syndrome
-- https://connect.mayoclinic.org/discussion/stiff-person-syndrome/

I'm not sure if you have tried this website but the American Association of Neuromuscular & Electrodiagnostic Medicine website has a link to search for a specialist: https://www.aanem.org/Patients/Find-a-Specialist. Have you been diagnosed with Stiff Person Syndrome?

Hello @johnbishop, thank you so much! My insomnia kept me up all night and fortunately, I was able to navigate a bit. I was dx with SPS in 11/2009. I had to retire officially in 11/2011 (I was a Supervisor for the Federal Court and the Courtroom Deputy to our Magistrate Judge). A public SPS group opened 6/2012. Within a few months, I was asked to be an Admin. I was not well, but wanted to keep up my computer skills, just in case a miracle comes up. It's been a Volunteer Advocate since 2012. We have almost 2250 members. I have been networking with Advocacy Organizations. This year I created a project list and I've been researching PubMed, videos; basically, almost everything that would help our new members. I have been working like crazy. I thank you so much. I just received her notification. I looked up the wrong pages. I will get into those groups and connect with that group. You are a blessing. Thank you so much! You just made my day! Have a wonderful day! 🙂