Busybusy, MG can be very confusing. The most important thing is to listen to your body. You will instinctively know, now or after awhile of having it, when you need to stop doing anything or when it's time to call your doctor or go to the ER.

Technically speaking, the extremes of cold and heat both make MG worse. They increase the activity of the enzyme acetylcholinesterase (AChE) whose job it is to clean up after acetylcholine does it's job of making your muscles strong. It's a built in checks and balances system in the body so "normal" people don't get too much acetylcholine. Not unlike many other "balances" in the body like carbon dioxide/oxygen or water/antidiuretic hormone, etc. If you get too hot and have too much of that enzyme, you don't get enough acetylcholine and get weaker.

Mestinon is a cholinesterase inhibitor (CI). It inhibits that enzyme from doing its job, so that we MGers can keep what acetylcholine we have in our neuromuscular junction longer and use more of it. Think of a crowded airport. All of those people will probably get through to the gates if there are a few security checkpoints open. If there is only one open, it'll take longer. Our muscle receptors are like those security gates; the antibodies attack them so we have fewer of them for them for the acetylcholine to get through and it takes "longer" for it to get to our muscles.

Sorry, I don't mean to be talking down to you! I think it's important to know exactly what's going on with our disease and why. It helps to know what it "does" to you.

This is the area where no one has answers because it's impossible to predict how MG will affect you! If you go out one day, MG may get a bit worse that day and in the next couple of days. If you go out and run errands, for example, two days in a row, MG may get increasingly worse in the next couple of days. If you have gotten yourself to a point where you are much weaker and insist on doing something, your MG will get "exponentially" weaker, like the Richter Scale for earthquakes. A myasthenic crisis, only for the sake of an example, is when you get to a 6.0 or higher.

What are the signs of an MG crisis? Well, if you don't recover muscle strength when you rest, that's a big sign that you need to call your neuro. I know I'm headed downhill when nothing will pop up my eyelids/eyebrows/face. If you have sudden weakness or shortness of breath, that's a huge warning sign that you need to STOP what you are doing, rest and call your doctor. The muscles at that point have run out of the necessary acetylcholine to continue doing what you're doing . . . like living. In fact, if you get so bad that you are very weak, can't breathe in or out well or can't swallow, even more than a couple of times, you need to dial 911. No "discussions" with family as to what to do. You can't wait with MG, it can go further downhill very quickly. And, not to scare you, but it can get to the point where you can't move or talk - or breathe. So you have to pay attention to your body and all the clues it gives you about getting worse.

Elanor, Let me say that I have modulating antibodies only and clearly have MG. Don't listen to that one doctor. 3 - 4%, or at least that they've studied, have ONLY modulating antibodies. Some MGers ONLY have binding and not modulating.

Susan has given you great ideas of how to maximize your health so that you can avoid getting worse. Sleep is a big help to MG. Heat, at least for me, is the number one trigger of my MG. Sleep is next, followed by any kind of infection. If your MG is not doing well, anything can send it downhill fast. So always call your primary doctor for help with things like an infection right away.

I've had MG long enough now (since birth - 52 years) to know how it "acts" but that doesn't mean MG can't surprise you. You might be doing activities and be fine for a few days, so you think you can still keep doing what you want. Wrong. MG will end up making you worse, even if you are a lot of meds. Activity makes MG worse because your muscles are fatigable. How much activity and how fatigable are the question marks that make a "newbie" go nuts. It still makes me go nuts. I did some cooking for Thanksgiving and crashed so bad three days later that I wasn't sure whether I was headed for a crisis or not. A couple days of rest and behaving myself and I was better. Though not "back to my normal" better. My MG is still on edge. The worse you get with MG, the longer it takes to get back to your normal.

Mestinon helps and may make you feel great but it's only a "helper" drug. Imuran, steroids, IVIG, plasmapheresis, etc. all help but they may not be enough either. You HAVE TO alternate activity with rest/sleep in order to keep your MG at an even keel. Maintenance is key with MG. Think of biking. You'd rather bike on flat ground than over steep hills, right? Pushing the envelope of MG gives you higher and higher "hills" to deal with. Not to mention that the higher the hill, the bigger the downfall.

I know I'm still bad this week, for example, because my body "put me to sleep" for a few hours after running a couple of errands. Normally, I can sit or lie down for a very short time and be better. Not superwoman better, just good enough to keep going. I'm not normally "tired," meaning sleepy tired. When I get tired like that, I know it's my MG. Of course, there can be other medical reasons for it but when it comes and goes like that, it's probably the MG.

Don't push MG. Please. You do NOT want to end up in an MG crisis. It's very scary. It's not morbid either to "prepare" for the worst because with MG it can get to the point of an MG crisis and it's better to be prepared for one. Some MGers lose their voice a lot. If you are like that, it's a good idea to have a tape recording of a calm explanation like "I am having an MG crisis. This is a recording because I can't talk right now. Please send an ambulance to . . ." I always make sure the person I'm living with knows if I'm worse. Not to alarm them but so they know if they get a call in the middle of the night, it's probably me needing help!

Set yourself up for success with MG. Make your life around your home easier. Put chairs or stools everywhere, including the shower. Why use your muscles too much if you don't have to? There are a lot of past posts dealing with these topics.

My arms are out of energy, so I'll stop now. You have to be your best advocate with MG. Trust your instincts. None of this second guessing yourself, like you did at the end of your post! Take some time to get used to all of this.

Annie