Today I made the trek back to midtown to see a rheumatologist for a consultation. My neurologist wanted him to "think outside the box" to see if he had any ideas on what is going on. Aside from the negative lab work, he feels that this is a pretty textbook case of Stiff Person Syndrome. That confirms that neurologist's suspicions, and it looks like my next neurology appointment will be to discuss treatment options. The upside is that since I have had symptoms for years with no diabetes, cancer, or serious autoimmune issues, I am unlikely to develop those comorbidities of SPS. I do not need to see the rheumatologist again unless the symptoms change and I need to be reassessed.
The treatment options are not fantastic, but they seem to work fairly well in the studies and anecdotal reports that I have read. The first stop is Baclofen, which wasn't particularly helpful for me. Next is Valium, which wasn't very helpful. I have only taken a low dose of Valium, and with SPS the dosage is usually fairly high. After that is what I am currently on - Ativan and Flexeril.
Steroids have been effective for me, but I am not willing to risk the long term side effects. There is no question of IF you will develop side effects with long term treatment. The question is WHEN. It could be tomorrow, or it could be twenty years from now. Aside from that, immuno-suppressants can be effective. As a last resort, plasmapheresis and IVIG treatment can help.
I can say that I have been nothing but pleased with the doctors and staff at Mercy. Every person I have spoken with has been warm and caring, and they actually listen. After getting brushed off by so many doctors in the past 13 or so years, finding a doctor that really listens and cares means so much. Their billing system is a little wonky, but I'm willing to deal with a little wonkiness in exchange for good care.