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DiscussionUndiagnosed Autoimmune with back pain, spasms, and stiffness
Autoimmune Diseases | Last Active: Nov 14, 2021 | Replies (91)Comment receiving replies
Replies to "Hi! I had they same symptoms and ended up I had stiff person syndrome. But it..."
Sylvia, do you recall what eventually led to your diagnosis of stiff person syndrome? Years ago my Antibody (GAD65) was 0.04 from bloodwork in 2004. In 2011 it was 0.11. Neck and upper spine MRI's done earlier this year were normal for my age (75). All my pelvic pain spasms began in 2002 and continue to now and are continuous when sitting and lying down. The pain is almost unbearable. My OBGYN diagnosed me when this began as Vulvodynia. However, he always said I have something else going on, since no medications and other modalities have helped. Was your stiff person syndrome diagnosed by bloodwork for the antibody listed above? I have dealt with this pain since 2002. If you were diagnosed from the antibody number, do you recall how high your number was? The neurologist did not do bloodwork when I saw him recently, only the MRI's. He has me on 2 mg. of Diazepam taken 3 times a day. It isn't helping with pain. My reflexes have always been overactive in my knees the 3 times I have been referred to him over the years. I have even taken up to gabapentin 3600 total mg per day in the past. At one time I took Lyrica 600 mg. per day. Still no relief. Many other medications through the years through other specialists my OBGYN has referred me to. The neurologist is treating me for a "suspected mild case of stiff person syndrome" due to the old two antibody numbers..