Hi. Welcome to the forum. First, don't be scared! Many of us have had MG a long time and are fine. Yes, it does change your life but it doesn't have to define you!

An MG diagnosis can be very overwhelming. There's a big learning curve, including all the things that can make it worse like certain drugs, infections, stress, hot and cold weather, etc.

First, No one can "require" you to have a thymectomy! Did they do the CT scan of your chest to look for a thymoma (tumor of the gland)? That should come first. And the Iodine contrast they use can make MG worse. You do no have to have the contrast either. Patients need to think about these things and decide if they want to say no or not!

There is no definitive study saying that a thymectomy will make MG better or put you into remission. How old are you, if you don't mind my asking. Age can sometimes be a factor since some studies show that it's more effective on younger patients. But, again, it's your decision and needs to be made after lots of thought, research, talking to family, etc.

Mestinon is not a "cure" and only deals with MG symptoms. It is a "helper" drug. If you get worse on Mestinon only, you need to call your neuro. Were they an MG expert? What tests were positive?

What I'm most concerned about right now is the symptoms you're talking about. If you get short of breath, cannot breathe well, cannot swallow or are generally much weaker, it's time to dial 911. Don't be shy about doing that if you are really bad! You can't predict how bad MG can get or how quickly if you are really weak. Don't be scared - just have a plan in place.

Until you get a handle on this disease, you may need to pull back on activities. You also may need to nap or sleep more. Alternating activities with rest is a good idea too.

What else can we help with? MG is not a fun disease but you'll get used to it. The one thing that I hate the most is the unpredictable nature of it. I can go out one day and get weaker afterwards. Then weaker the next day and then get what I lovingly refer to as "2 day payback."

Hang in there. And call your neurologist. You do NOT want to go into an MG crisis (when you get so weak it's life threatening). I wish you the best with figuring out what you want to do with the thymectomy. Brian's given you some great information.

Annie