Hello fellow warriors,
You might remember me from years ago when Biogen sold faulty batches of Avonex. And they told the FDA it wouldn’t harm anyone. So, patients like myself unknowingly injected it.
Anyway, my MS hasn’t been cured but remains manageable. Recently I was also diagnosed with Stiff Person Syndrome. A blood test revealed it and history confirmed it. If you have severe spasms, ask for a GAD65 blood test.
It’s very rare, one patient in a million gets it. So, 350 people in USA.
So, it’s hard to exchange info and support! There is a FB page, but bulletin boards such as MSWorld are a nice organized way instead of free flowing. And FB is not anonymous.
Thus, I have started a Stiff Person Syndrome sub -forum at the Braintalk bulletin boards. I think it’s not allowed to post the link here, but google should work.
It’s not the archived dead SPS at Braintalk. It’s my new one I started yesterday. If you know of someone with Stiff Person Syndrome, please send them over.
MSWorld continues to be a great forum for MS. , as we all know
You might remember me from years ago when Biogen sold faulty batches of Avonex. And they told the FDA it wouldn’t harm anyone. So, patients like myself unknowingly injected it.
Anyway, my MS hasn’t been cured but remains manageable. Recently I was also diagnosed with Stiff Person Syndrome. A blood test revealed it and history confirmed it. If you have severe spasms, ask for a GAD65 blood test.
It’s very rare, one patient in a million gets it. So, 350 people in USA.
So, it’s hard to exchange info and support! There is a FB page, but bulletin boards such as MSWorld are a nice organized way instead of free flowing. And FB is not anonymous.
Thus, I have started a Stiff Person Syndrome sub -forum at the Braintalk bulletin boards. I think it’s not allowed to post the link here, but google should work.
It’s not the archived dead SPS at Braintalk. It’s my new one I started yesterday. If you know of someone with Stiff Person Syndrome, please send them over.
MSWorld continues to be a great forum for MS. , as we all know
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