I'm on Mestinon about 45 mg every 4 hours with mostly breathing speaking swallowing issues. I really want to attend a family gathering for a few days, camping in 85 - 90 degree weather. Any recommendations or advice?
Mary

I know everyone's different, but at least for me, it's a difficult situation. Of course I'd want to go on the trip, but I know I couldn't tolerate the weather. Depending on where it is and your options, if you can get a motel room near the camping site and visit with your family part of the time, maybe that is a solution. If you visit with them a little bit in the mornings, when it is cooler, that might be easier on your MG. Then you can stay in your motel room or do some other trips near your motel room, hopefully in air-conditioned comfort. Maybe you can see a movie! Camping in 90-degree weather would really be very difficult, at least for me, and I think for a lot of people with MG. It could increase our symptoms and might even prompt an exacerbation or crisis which could put us in the hospital.

Again, it's very hard, but for me I would choose to stay home. It wouldn't be worth the risk to make myself more sick and possibly put myself in danger due to the heat. I'd tell my family that I am sorry I can't go this time, but I look forward to seeing them at the next gathering, which hopefully will be soon. You need to do what's best for you, of course, but whatever choice you make, please take good care of yourself.

Take care,
Erin

I have to agree with Erin. Unless you have an air-conditioned cabin or hotel/motel, you don't stand a chance. In which case, you'd better hope there's a hospital close by.

This is the hardest part of having MG; missing out on activities with family or friends. What healthy person wouldn't want to be outside enjoying the summer?

I personally can't do it anymore and haven't for a long time. It's not worth the trip to the ER.

If someone is stable and on drugs other than Mestinon, there might be things one could do to tolerate it. It would still be a risk.

There are cooling vests that some people use. But I've found that using those kind of "tools" can be deceptive. Even a vest can't cool down the entire body.

You might be in the denial or bargaining phase of MG! Unless someone has an air-conditioned Michelin suit, your MG will tank you under those hot conditions.

If someone says, "No, those pants don't make you look fat," you won't die from it. But lying about what MG can do, could endanger your life.


Annie

I suppose a little bargaining, but I live in a fairly temperate part of Oregon and it never gets really too hot or too cold so I have no first hand experience. I have heard others discuss it. Bummer.
Mary