Stiff Person Syndrome: Want to connect with others

Hello, my partner was recently diagnosed with SPS and I would really appreciate having someone to talk to. I feel pretty lost and confused.

Hi. I am a spouse of an sps patient in Ohio. There are a whole 4 people diagnosed in ohio and very few docs who have heard of disease. Mybhubs was misdiagnosed for 10 years based on his Job and age. Finally at 33 and losing feeling of his legs and looking like he was having a seizure an old school neurologist did sps panel thru Mayo clinic and it came back positive for very high levels of antiglycin antibodies, a low but positive gad 65 level, they did a spinal tap and it was negative for everything. His spasms in the last 2 years have now spread to jaw neck spine and chest muscles, he is 6ft tall and now only weighs 124# due to spasms affecting his gut. His pcp does an old school muscle relaxer, pain meds, diazapam aspirin and pantoprazole. Nothing has worked and no doc in ohio will do ivig or plasmapheresis so we deal with life every day at a time. It's affected myself and our kids. As a nurse, I have to fight with every doc we come into contact with because of how rare the disease is.

I was diagnosed with SPS IN 2020/21. Went through many tests including X-ray and MRI. My gad 65 was and is very high level. Was prescribed with Baclofen and Diazepam. Then on IVIG. Started with 3 months(twice) didn’t see improvement. Changed to every 4 weeks for 1 1/2 years. Recently we are trying on 8 weeks. I got stiff from waist down, and couldn’t move. Spasms and anxiety makes it worst. With the IVIG, very rare spasm but anxiety still there. Good days and bad days(I need support to walk).I’m in Massachusetts in my 50s. Appreciate to hear if anyone has the same symptoms.

OMG…that is so scary and sad. May I ask why the doc does not do the IVIG trial for him. I totally agree that the disease is rare but need to try every possible method to make him feel better.