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.