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Julie,
Cyndi DeHoff and I are working to get the group together. If any of you have not already done so and are interested please PM Cyndi or I your emails so we can connect. Hopefully we can get this together by next week and send out emails.
Your story is interesting to me. Mine started about 2012 near as I can put a finger in it. Visually issues. Neuro opthamologist ran achr and musk. Negative. Then a bout with Neuroendocrine cancer 2014. After my surgery I’m guessing the drugs and or trauma released full in MG. More blood tests, went to UCLA to a rheumatologist there. They and UVi ran every antibody know in 2015 all negative except for positive ANA 1:1280 amc centromere antibody. After an accidental discovery that I took prednisone and felt much better they first out me on 10 mg, we weaned back to as low as I felt better on and it was settled in 5 mg. All the while with caution with the concern of scleroderma which pred is contraindicated for. They dismissed me with undifferentiated connective tissue disease. Pretty sure that’s what they call, “ we have no idea disease”.
my daughter was dx’d with it 25 years ago, she began with bilateral drop foot at 27. The. After not positive antibodies she finally had a positive ANA after 5 years at the end of her pregnancy. Dx’d with lupus. It got quite severe and she did a clinical trial which was not put forth fda> 2 years later she was given rituximab which out her lupus in remission. Her muscle problem has moved to her upper body and respiratory. Very severe. She is headed to Mayo in March to investigate further. She actually has never been given SFEMG which astonishes me.
my father was told he had ALS. I now believe he had MG based upon his health path. Now deceased so too,late fo find out.sister had chrohns, RA. So yes un answer to your question as autoimmune runs in families we’ve been hit hard.
i really believe this connection can serve us seronegative well to compare and perhaps take our similarities to the researchers.
Interesting that so far it is all females that have responded.are there any seronegative males out there?