• GregD

    Member
    June 16, 2025 at 12:56 pm

    Within the last 2 weeks was in the hospital for 5 days, learned I have mg. Never heard of it but continue to learn…. On meds, start ivig next week 2 days in a row every month. Being seen by a neurologist but see a mg neurology specialist in September. All kinds of things I’m still learning..I hope I get it back but I cannot get my lip emboushure whereas I used to play the B flat military fife..glad I made it to my bucket list evert..150th Gettysburg reenactment. I hope I can play again some day…

    • Jodi

      Member
      June 17, 2025 at 1:14 pm

      Thanks so much for sharing, being newly diagnosed is a lot to take in. We are glad you’re here. It’s tough when MG affects something you love. Hoping IVIG helps and that you’ll get back to it someday. We’re rooting for you!

      -Jodi, Patient Advocate

  • GregD

    Member
    July 17, 2025 at 4:39 pm

    Terrible! I’m still learning but I am advocating for myself. My wife recently had her 70th birthday…all with recovering from GBS. So her birthday was at my daughter’s house but that involved lots of visitors, heat, sun, no rest. Long story short, I got out of the hospital yesterday after being there after 4 days. Got second round (one week early) of IVIG (X 2 days) and upped my mestonin from 3 per day to 5 -6. Trying to slow down…but need the heat down in Chicago. Keeping a journal and daily mg symptom book to take to the mg (specialty) doc at the end of September.

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