Nice to see you again, Lesmom.
For those of you who go running or anywhere else there is not a phone or people to help, I hope you will have a cell phone and a medical alert card with you! But then, what if you get much weaker and can't talk?
Sure, you should be able to do some activity, alternating with rest, and be "okay." But the problem with MG is that it does not act like an algorithm. It can surprise you when you least expect it.
Don't forget that activity heats up the body. Heating up the body increases acetylcholinesterase, the enzyme whose job it is to mop up acetylcholine. So more activity + heat can counteract the effects of Mestinon.
Staying hydrated can help keep your body cooler. Cooling down after an activity helps. Lying down for 15 - 20 minutes after activity is smart too.
Also, exercise can not only deplete water but electrolytes. Some people on certain drugs (like Pred) can have more issues with fluid and electrolyte balance. So just keep that in mind too since an imbalance of electrolytes like calcium, potassium and sodium can cause muscle weakness too.
Drugs are great but even with them, you still have MG. Just talk to the MGers who have more severe MG and not even doing nothing in addition to major drugs can make their MG better. Yeah, there are some MGers who do great and can do anything. But can you really know how your
MG is going to go yet?
I've had this stupid disease my entire life. It can wax and wane. But it can also surprise you when you think you have it all figured out. So at least be prepared for "what ifs," be cautious and set yourselves up for the best MG success.
Your doctor can be "fooled" by MG too. If you are sitting in your neuro's office, well-rested and not doing anything, they can declare that you're fine. Sure, in that one, static moment in time your MG looks fine. But MG isn't static. It's very deceptive to think that MG is the same while sitting still as it is while exercising. And because you really want to do something, you can "fool" yourself into thinking that you can do anything.
Don't forget about the often delayed reaction of MG. Yes, MG gets worse when you dry your hair and then better after you stop. But MG can also continue to get worse for the next 1 - 3 days (average) without you even doing more. So you might be able to exercise one day but not be able to cook dinner 2 days later.
It just takes time to figure out what you can do. No, you shouldn't give up all of what you love to do but exercise is one thing that needs serious thought. I hope you will all be fine during and after doing it.