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Mon, Apr 6 4:53pm · Undiagnosed Autoimmune with back pain, spasms, and stiffness in Autoimmune Diseases

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..

Sat, Mar 7 9:42pm · Undiagnosed Autoimmune with back pain, spasms, and stiffness in Autoimmune Diseases

I have dealt with pelvic pain the past 18 years, diagnosed with vulvodynia, many medications over the years and been referred to several out of state OBGYN specialists, acupuncture, physical therapists, had chiropractic care. None have given no relief to my pain with the terrible spastic pelvic floor feelings of constant pain 24/7 during these years with sitting and lying down. My central nervous system seems to always be in "overdrive: I am a 75 year old woman and this began when I was 58. I was referred to a neurologist two years after the symptoms first started, MS was ruled out, my reflexes were overactive, and my Antigad antibody level was 0.04 at that time. A mild case of Stiff Person Syndrome was mentioned then, but stated that it was not a conclusive diagnosis, but having the antigad number was "interesting". Baclofen, diazepam and several medications were tried during several months and did not help at all. Then referred to the same neurologist seven years later, Antigad antibody level at this time was .011, and the neurologist said he did not think the reading was suggestive of a stiff person syndrome, but "was interesting". Then referred to him again recently. MRI's were taken of my neck and back this time and were normal other than age related degeneration which is considered normal for my age. He did not do blood work on my recent visit, and gave me a prescription for Diazepam 2 mg. to take 3 x daily. It isn't helping. I see him again in 2 months. He now is treating me for "perhaps" a "mild case of stiff person syndrome." My symptoms still remain the tingling in my entire body from head to toe (no shaking- just always conscious of the tingling sensations), this terrible pelvic pain with sitting and lying down, and some stiffness within the last 6 months or so when getting up in the morning, which I attribute to age related arthritis, perhaps. My lower back now hurts and the pelvic pain and tingling now extends down both legs and into both feet. May I ask what was or is your AntiGad 65 level? (My sister died at age 56 with a paraneoplastic syndrome that was caused from stage 2 carcinomic lung cancer of which she was in remission after 2 months of aggressive chemo and radiation treatment. She never felt better after the remission and it was found that she ah the Antigad .Anti-HU gad that was discovered a month before she died). I wish there was more input within the Mayo Clinic Connect site regarding Stiff Person Syndrome. From what I am researching, I understand that this is a rare autoimmune disease. Have you been treated at Mayo Clinic? At this point, I am still unsure if I do or if I do not have Stiff Person Syndrome.