I was diagnosed with stiff person (limb) syndrome in August of 2013. Mine is in my right arm. It is caused by a high level of GAD65. I worked full time for 28 years for the same company and now have been off work since Oct 1st 2013. I was given valium, then I asked to be taken off due to not being able to function on it, My doctors put me on Baclofen, Clonazepam and I have had 3 IVIG treatments, schedule possibly for more. I also have been doing physical therapy, message therapy and hot yoga, heat helps relax my arm. I also experienced painful spasms in the beginning and sometimes now if I push to hard with the physical therapy. I have pain mostly at night when my arm is laying stiff and not moving. I wake up usually between 3pm an 5pm. I have not slept a whole night since July 2013. I'm hoping to find someone else that has stiff (limb) syndrome to find out what treatment has helped them, and to also bring more awareness to this illness, and to find a support group. I am blessed it's in my arm, but not sure if it will move later to my spine and since this is so rare my doctors can't make any promises. I have contacted Mayo Clinic in Rochester MN and they would like to see me but unless my insurance will cover it I don't see how I can afford to go. Please if possible provide support groups for stiff limb syndrome. Thank you
ps my pic was from a couple yrs ago in Paris. I could not figure out how to use webcam or video
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