Hi, Sue. Welcome to the forum!

You sound very sad, which is a fairly reasonable reaction to feeling so ill.

It doesn't really amaze me that doctors aren't always good at diagnosing. They often are more "left-brained" and tend not to be creative. And you need to use that right brain, too, while solving problems!

You might have more than one thing wrong. What is silly is that all of the things you describe have very clear guidelines for diagnosis and should be obvious to an expert. If you have all of them, I guess you'll make it into Guinness!

I would have to say that, for me, things went undiagnosed for periods of time instead of misdiagnosed. Both are not a good way to doctor.

If you have MG, the heat makes it MUCH worse. Stay out of it! Have you read about a "myasthenic crisis?" It's where you can't breathe, swallow, or move well and it needs immediate care in an ER (dial 911 if you feel that way). It shouldn't matter if you don't have a diagnosis yet. If you are that bad, go to the ER and tell the ER doctor that you might have it.

Fatigable weakness is the hallmark of MG. It can happen in any of the congenital myasthenic syndromes (genetic disorders that can cause too much or too little acetylcholine) and LEMS (Lambert-Eaton Myasthenic Syndrome).

So far, they have tests for the AChR antibody and the MuSK antibody. Antibody levels fluctuate and do not necessarily reflect the severity of MG! Some doctors don't know that. There are more tests that they can do, such as the Tensilon test, RNS/EMG/Single Fiber EMG. And a GOOD clinical exam should be very revealing.

Also, a neuro-ophthalmologist can check to see if your eye muscles fatigue, if you have double vision (which goes away if you close one eye if you have MG), and can sometimes do a Tensilon test.

A pulmonologist can assess your breathing! And do other things such as check your oxygen saturation and arterial blood gas if you're having trouble breathing, which it sounds as though you are. They can also check out the wheezing you're having, which sounds more like asthma.

Life shouldn't suck! I don't think there's anyone here who can't relate to the way you're feeling. Sometimes you just have to take a step back, call in the cavalry, and get some better help. And, really, you NEED to rest! Don't do anything more than you have to. Don't go out in the hot weather at all.

Right now, you shouldn't be alone, either. I'm not trying to scare you, but, if you have MG, you might need someone to dial 911 for you if you go into a MG crisis. Please take it easy!!

Try to let the doctoring nonsense go. Stress isn't good for you either. The only thing that matters right now is getting the help you need.

Let us know how you're doing! Take care.

Annie