Hi, Mopsy23. I'm sorry you aren't doing well.

Did they do a AChR binding test? That is usually done with the modulating test. The blocking test isn't done much anymore. Which lab did the test?

Antibody levels fluctuate. Those tests may need to be redone, possibly at a different lab such as Mayo Clinic.

You sound as though you have the typical fluctuating weakness of MG. As 4-eyes said, you really need an MG expert to help you. Do you know of one where you live?

If you become so bad that you can't swallow well, can't breathe well, or aren't able to move your other muscles, then you need to dial 911. Before treatment, people with MG can have a "MG crisis," where the muscles are so weak that the condition becomes life-threatening. Whether or not you have a diagnosis doesn't matter. At that point, you need immediate care.

Aspiration of foods or liquids is a real risk with MG. Some people develop aspiration pneumonia from that. If you have any signs of an infection, see a doctor right away.

You could also see a neuro-ophthalmologist and a pulmonologist. You can have breathing tests that can evaluate whether any shortness of breath is from a neuromuscular disease. And a N-O can evaluate the double vision with specialized tests that a regular ophthalmologist doesn't use.

Please be careful. Try not to overdo anything. Heat also makes MG worse, as do other things such as infections, stress, lack of sleep, certain drugs, etc. There is more information at Home

I hope you'll find out what is going on soon. Your symptoms do sound like MG. Please let us know how you're doing!

Annie