gMG
I was diagnosed with gMG in February 2024. I have been on Pyridostihmine 60mg since then. However, on January 11, 2026, I was in a car accident resulting in a brain bleed and a lot of trama to other parts of my body. Since then I have experienced more droopiness to both eyes and excessive weakness to both hands and fingers. I am very concerned and wonder what I should do?
yeah when my MG got to it worst, I was losing significant use of my hands, as a 60 wpm typist having to 2 finger peck type was awful, plus the choking, chewing, swallowing issues. But as David said, pyridostigmine is a stop gap medication, I guess if that alone makes you stable, I could see it, but there are other meds out there, many of which I just happen to be allergic to, but i have a regiment that is working for me atm, allowing me to mostly live a normal life. IVIG infusions gave me the first big improvement, then later I tried a bunch of long term medications that take a while for them to kick in and i had allergic reactions to 3 of those, then I switched from IVIG to Vyvgart based on a specialist recommendation and that worked far better than the IVIG, so for now that is what i'm using, along with prednisone, but that is down from 70 max down to 20 now. Still slowly trying to work my way off the prednisone. But get a good neurologist with MG experience, they can walk you through the options and try different things. Even if one thing works, you can try another to see if it works better, don't settle for ok.
Thank you so much! The doctor who diagnosed me was the one who was on call while I was in the hospital after the accident. He put me on a regimen of prednisone and assured me that would get me back to where I was before the accident. I changed from using him to another Neurologist who pretty much felt like I should remain on the Pyridostigmine as well. I do have an appointment with the second Neurologist on March 27, 2026. I will ask her about taking the next step in medication. Again, thank you so much!
Find a good neurologist who has experience with MG. It's pretty shocking that for two years you have only been on pyridostigmine. Pyridostigmine does nothing to disable the production of acetylcholine-binding antibodies and is normally considered a stop-gap treatment. By now you would usually be on an immunosuppressant or one of the newer treatments. Trama is very likely to trigger an exacerbation of your MG symptoms. Talk to your doctor about your worsening condition. You don't want it to get worse.
