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Do You Have Seronegative Myasthenia Gravis? What Treatment Has Improved Your Symptoms Best?

Are you diagnosed with seronegative MG?
Which treatments have you been approved for? Which have you tried?
Which form of treatment offered you the most improvement, and what doses?
- Jodi, Team Member

  1. Yes I am Seronegative. The Mestinon helps a lot because I can tell if I miss a dose by weakness/heaviness in my arms and legs. Having 3 other autoimmune diseases it’s real hard to pinpoint flares and what the culprit is though. But I also haven’t had the double vision since beginning the mestinon in January of this year. Looking back on things, I have had to have my esophagus stretched twice but always attributed it to either the Lupus or Sjogrens. It could have been the MG all along?

    1. I've recently been diagnosed with generalized seronegative myasthenia Gravis. I tried Mestinon twice but the side effects were too bad to continue. Especially the muscle spasms. I'm on carbamazepine for the spasms now but nothing for the MG. My neurologist wants to try me on IVIG but I'm reluctant. I've heard about terrible side effects including meningitis. It would be helpful to me if I could hear some of the members experiences with IVIG treatment. Thanks for your help!

      1. I am seronegative and tried mension and prednisone.didt on octagam infections every 3 weeks.seems to be helping a little. I had 5 so far.4 hours each time 😕.so far it's only ocular mg

    2. Yes, he's a bit stubborn. He tends to downplay the benefits of IVIG. My son called today and said to him "You just had IVIG, didn't you?" He could hear the more effective diaphragm from across the state! The treatments work--but patience is the key. Juliana (team member.)

      1. Hubby has suffered it for about 5 years. Imuran is slow but works, and allows a gradual reduction of prednisone (which caused bone fractures.) I'd call today "remission." I am not saying forever, but patience worked.

        1. Actually today was a bad day. We had to get a big car repair and he had to do some long driving. He normally doesn't drive much as when he is tired he gets double vision. For the next few days he is on big liquids and Gunsmoke marathons. A big part of MG is minding your body's signals.

        2. Absolutely. To be perfectly honest learning to listen to my body is probably one of the most difficult challenges I face - I truly hope your husband is doing better.
          ❅ team member Deborah ❄️

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