If the ER didn't "know" to test for MG, they wouldn't have ordered a test for it - they are only "technically" there to deal with the problems any given patient is having when they are admitted to the ER. Since only around 600 people in the US are diagnosed with MG in any given year, it's not something that would routinely be included in an ER bloodwork panel.

Until you get a firm diagnosis, you might want to make sure that you have a "buddy" with you if you go on any more hikes (I would advise "no more hikes", but that's up to you!). You DEFINITELY do not want to go into the water without someone keeping a close eye on you at all times - if your muscles give out on you while swimming, you won't be able to keep from going underwater (that's been the hardest thing for me to adjust to - I LOVE being in the water).

If you ARE diagnosed with MG, you will definitely want to get a Medical Alert bracelet of some sort - if you go into a crisis, you may not be able to talk. There are several medications that are absolutely contraindicated for people with MG, but if medical personnel don't know that you have MG, you could be given one of those medications by mistake.

Take it easy - whether you have MG or not, it's obvious that you are having problems upon exertion; trying to push yourself is going to make things worse, not better. It's hard for those around us to understand this - we've been told the "opposite" for years - but you're going to have to insist on being allowed to rest.

I felt bad for my husband when I first got diagnosed, because this wasn't what he "signed up" for. But he has been great - he doesn't want anything bad to happen to me, so he keeps a close eye on me. At the beginning, he didn't understand how just the tiniest amount of exertion could make me so tired, but as time has gone on, we've both learned what living with this disease means. He's my biggest champion now.

I feel really bad because he works all day, then has to come home and do "my" jobs as well (our kids are grown). I try my best not to be a burden, but he always tells me that he loves me and not to worry about it - he just wants to have me with him.

I don't know what I did to deserve him, but I'm thankful for him every day....