It appears not everyone who has Stiff-Person Syndrome is affected in the same way and some medications work for some and not others. Some have tested positive for GAD 65 Antibodies and others have not. Some are being treated by a Neurologist and some by an Autoimmune Specialist. Some have been diagnosed correctly and others have not.
Does anyone know what the long term prognosis is?
I have never hear of anyone recovering totally. My neurologist told me that they would aim to try to get my medications to where I was comfortable and hopefully I would never get worse. Now, at one point about 3 years into treatment, i was able to come off the meds and be ok for about 3 months. That shocked her, and since then i haven't been able to go off them again and they haven't managed to stabilize me yet and that was 2 years ago. I don't know how much of that is because i went off them for that time period.
What variant of Stiff-Person Syndrome do you have? What medications and dosage where you on? Are you able to work? How long did it take before you improved significantly?
I can be reached directly at rtbucci@hotmail.com
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