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MG and Stiff Person
Good Afternoon,
I was recently diagnosed with Stiff Person Syndrome along with myasthenia which I was diagnosed 2 years ago. Anyone else out there experience this? They are both rare and I am thankful to know now why I am having horrific stiffness and spasms that landed me 29 days in the hospital. But to have both is so rare even doctors are at a loss and the treatment for SPS causes issue with the Myasthenia. I am hoping to make it to Colorado to see a specialist that sees people with both.
It has been a road to say the least. I can’t even go into detail right now with my experience but the hospital has been my second home :(.
I just didn’t know if maybe any of the few diagnosed with both maybe on here?
Thank you,
Jen
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3 Replies
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Hi, Jen.
I am currently being tested for MG. So far I’m triple seronegative, so things are not moving as quickly as I would like.
One of my symptoms Could be stiff person syndrome, which I’ve never heard of until reading your posting. Interesting.
Sometimes over the last year, and more often recently, while lying perfectly relaxed in bed, I experience a total body paralysis. It’s very scary! I can not open my eyes, or talk, or move any part of my body. I can only hear, and know my heart and lungs are working, and that’s about it. It decides on its own when it wants to retreat, sometimes in 15 – 30 minutes, sometimes a few hours! I once ended up in the E.R., but by then it was gone. They did a cardiology workup, which was perfect, so I went home with no answers. I had not been to a neurologist yet.
I wonder if there’s anyone else out there who has experienced our symptom? If so, I’d love to hear from you.
Sunshine
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I don’t have stiff man syndrome but I know how much it would mean for you to find someone who has both diagnoses. I do know that it is common for someone with MG to have other autoimmune diagnoses at the same time. I have MG and vestibular migraines. Wouldn’t it be nice to just deal with one thing. This organization is growing and although both of your diagnoses are rare, I think you just might find a match. Good luck.
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Stiff person is also being considered for me on top of MG. Bloodwork and many symptoms point that way. Just waiting to see at this point.
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