Donald Andelsman
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I was diagnosed with seronegative ocular MG and later told that I had GMG. I went thru a few rounds of IVIG and developed severe body rash for a month. I was later put on Vyvgart and had Zero effects….no good…no bad.
My neurologist was going to send me for plasma infusion and while examining me changed his mind and because of onsetting diabetes wants me on Ozempic and a BPAP instead of CPAP. I am in 5th week of Ozempic through the VA and having trouble getting BPAP.
IVIG was bad for me and Vyvgart did nothing. I still feel like s…
Always achy and tired, sleep a lot, and feel better in PM than AM. I am seeing neuo in 3 weeks.
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I have G MG & use a Cpap machine for sleep apnea.
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After my 1st round of IVIG for GMG I developed a severe rash all over my body. It took nearly 3 months to go away. I was seen by my neurologist, dermatologist, and internist.
I was switched by neurologist to Vyvgart infusions…finished 1st round, no better or worse…am now starting 2nd round of Vyvagart. This infusion stuff seems endless, but MG is a tough illness.
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After 2 years and seeing 3 neurologists I was just put on 20 mg prednisone, 10 mg 2x daily. Mestonin kept me in the bathroom too often. I am feeling about 50% stronger, but always hungry. This improved feeling is what I was looking for…but I gained 25 lbs during Covidtime. I hope I can continue to feel better and stay at the ‘starter’ dosage. I am a senior and on other drugs as well. Please keep this forum going, it is great hearing from others with MG. Donald Melville NY USA
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I had 2 Moderna shots in February at the VA. I has flu-like symptoms with a low fever after the 2nd shot…lasted 1 day. Last month I had a 3rd Moderna shot and was quite sick with a fever for 4 days. I haven’t heard of anyone having it that long. I have a somewhat mild MG, both ocular and general. I don’t know if my MG is related to the after affects. I had to stop Mestonin because of bathroom issues and am not on any MG medication at the present. I am still looking for the right neurologist that can prescribe something for me. I live in the Long Island section of New York.