Kathie,

Very sorry that you have experienced this. MG is nothing to mess with especially when you get that weak.

I had a recent situation to share. My MG was diagnosed in 2008. Fast-forward through that year I've had plasmapheresis, IVIG, radiation, chemo, and the thymectomy. The thymectomy didn't give me remission from the symptoms so I'm on Mestinon along with the timespan, Imuran, and Prednisone. Until this year, I was able to minimize to only Prednisone and Imuran, I was living a normal life since 2008.

Now, the trouble started near the beginning of this year. My weakness started to come back. I started feeling my eyes getting a little tired, then my upper extremities of arms and legs, then the neck and slowly swallowing.

I knew this was bad the moment my eyes started getting tired. I called up my neurologist's nurse to give my doctor the news asap. My neurologist was booked for at least a few weeks. Even, then, my nurse called me back the same day and told me to come in the next day. My neurologist made a exception to see me on a day where he didn't even see outpatients.

He told me he knew I was dropping quick and made it important that MG was no matter to mess with. He increased my Predisone and put me back on Mestinon. I was thinking to myself that the Mestinon will just bring me back to normal like it did before but I'd just have to take it every 2-4 hrs. But boy was I wrong. Mestinon no longer worked like it did for me 4 years ago. It did not help with the eyes and only did with swallowing and a little for the arms and legs. I notified my doctor that I was getting weaker the very next week. He wanted to admit me into the hospital, but I refused as I hated it in there. He let me know that if I can't handle my own saliva I got to tell him or get admitted to the hospital right away.

Sorry for the long post, but I felt you'd like to hear it from another fellow MG victim haha.
As for the latest update for me, I'm back on Mestinon and timespan because I fear when i wake up I would not be able to take in my first dosage of mestinon. I'm also increased back on Prednisone and I'm recently just had my session of IVIG that I haven't had in a long time. I'm very weak at the moment but I'm hanging in there.

I hope you or your loved ones can talk through to your neurologist to let them know how your suffering and hope your doctor understands your dangerous situation so that you can get help asap.

-kt