Not everyone with MG has a thymoma. And not everyone with a thymoma has MG. Weird, I know.

I am still going to caution you!!! Mestinon is a helper drug, which does nothing to address the immune attack (even though ONE study was suggestive of that). In the summer, you can go from okay to a crisis in a very short period of time. If you must exercise, why not do that indoors with a fan blowing on you? Don't push MG or it WILL push right back!

Also, MG is really odd. You can do something one day, be weaker the next and be even weaker the day after that. You can't always tell how much weaker you will become from an activity. Why not try walking every other day or 3x per week? And then have a nap afterward!

As I say like a broken record, MGers can become so weak so slowly that they might not notice how badly they are doing. That's what happened to me in July 2005 during my MG crisis. By the time I made it to urgent care, I could barely walk, stand, breathe well, and couldn't squeeze the doctor's hands. After which I was promptly admitted to the hospital.

MG muscles also become weaker while sleeping. That's why a consult with a pulmonologist is so important. They can do baseline readings to compare to ones if you become worse. They can also do an overnight oximetry to see how you are doing at night (to make sure you aren't hypoxic).

You should know within a half an hour if Mestinon is making a difference. When I first started taking it, I near a beach. I went for a walk on the sand (pretty tough on the legs). Then I took some Mestinon, waiting and walked again. The change was obvious and dramatic. But if someone is really weak, Mestinon might not help as much.

Taking a higher dose isn't necessarily better with Mestinon. Sometimes, if someone is active throughout the day, taking a steadier dose like every three hours can be better. You have to work that out with your neuro though.

Give yourself some time to get used to this disease. MG is very unpredictable and can fool even us veterans at times. Those newly diagnosed, and under treated, are at a higher risk of a crisis. So, be cautious!

Annie