Get a second / third opinion. Try to make sure they Specialize in MG. You hv to fight for you.

For me personally I'm 43yrs old eyes going out and falling when all I'm doing is trying to work. That is not acceptable. I will research all my options and know where I can go. My Nero agrees just hv to find what we need to do to get it back under control. And what the wonderful insurance will let us do. That has been my biggest struggle.

But for them to tell wait till your in crisis makes no sense because Imnran can take up to a full yr for it work.

Hi Megan

I have been told, by several neurologists, that the antibody number levels have no correlation at all to the severity of MG. Five years after my thymectomy my numbers Have steadily risen in to the 1200s, and I have been mostly symptom free since shortly after my surgery.
Keep searching for a neurologist that will treat your MG aggressively.

Lisa

Hi whales, yeah im just doubling my mestinon right now to help me feel ok. My neuros having me do another antibody so he can decide what to do.

Hi lisa, i think so too! Bc even though my nums are going down my symptoms are still the same. I just hope that if my nums turn to 0 my symptoms disappear haha. Are you currently takingg meds? Bc i was also symptom free after my surgery it just flared up when i went back to work after a year

Have you ever been on prednisone? This time last year, I couldn't tie my shoes. Finally after 4 months of going to this neuro who did a bunch of tests that all came back okay, he put me on prednisone and it worked immediately. I went from 30 mg a day down to 2.5, no Mestinon and then felt so good, decided to go off of it. That was the end of this last September. Five weeks later came down with a flare of double vision that lasted 4 weeks. I immediately went back on the prednisone up to 40 mg a day and Mestinon and finally now 5 months later am down to 5 mg of day of prednisone and no Mesitinon. I am trying to go every other day on the prednisone and take Mestinon on the days I don't take the prednisone and see how that goes. Like someone posted, go see a neuromuscular physician and they aren't that great either, but perhaps they will have some different answers for you. After being on this site and reading all the posts, everyone seems to have different symptoms and results and different treatments as well. Good luck.

Megan
I have not been on any meds since my thymectomy and that was only Mestinon(which didn't help my ptosis).

Mestinon causes rebound weakness when it wears off. It stopped working consistently for me. I'm at a crossroads because my MG is stress induced I do not have antibodies in my blood

hey grecogirl i was on 50mg prednisone when i was first diagnosed 2 yrs ago. Stopped taking it after my thymectomy and i swore i would never go back because the side effects made me feel so bad lol. But after another visit to my neuro last week, he convinced me to take prednisone again 5mg 2 x a day, and i instantly felt better. I guess my body just got used to the mestinon.

Maybe try huperzine ? It's really effective for many - I've read of many people leaving mestinon and going to huperzine instead. Lasts longer, no rebound effect, inexpensive, less side effects (I've not experienced any after 2 1/2 years of taking it daily.) It's a supplement - available over the counter and works via the same mechanism as mestinon - my Dr actually looked that up and confirmed because she was curious.

hey Skiesmama, that actually sounds interesting! :D im looking at it online and its definitely cheaper. Its def worth a try since i think ive become immune to mestinon thats why its not really working much now. Is it safe to take with prednisone?