Its been a while since I've been here. Just wanted to do a quick update and then go to bed (I'm still up because I accidentally took 20mg of prednisone at bedtime since it looks exactly like my new med).
It turns out I probably don't have AS at all. I've had conflicting reports and my neuro wants me to see an AS specialist to confirm. I was diagnosed with myasthenia gravis about two years ago and put on meds for that. Some symptoms improved, others continued to get worse--I was using a walker and a wheel chair to get around. About a month ago I went to my doctor and mentioned that I thought I had Stiff Man Syndrome. She agreed I had most of the symptoms and ordered the test, but warned me its a 1 in a million chance. The test came back positive and I've since been started on treatment for that. The last two weeks I've been able to walk again
I have surgery scheduled for the MG in two weeks and they're putting a catheter in tomorrow, so I need to try and get some sleep, but will try to update everyone on my condition when I get a chance.