Hi, Waterwillow. Welcome!

Ditto on what 4-eyes said.

Did you have positive binding or modulating antibodies or both? The modulating can sometimes be positive in LEMS and liver disease, but a false positive in MG is pretty rare.

With your other symptoms, chances are pretty high that it's MG.

You have the legal right to see your medical records! If they don't give them to you, they are essentially breaking the law! Call the clinic manager and tell her that you have the right to see them and want them sent immediately! Your antibody tests, plus the doctor's notes, too!

Some changes in the brain can be indicative of a B12 deficiency. Have you had yours checked?

In MG, we don't get enough acetylcholine—what I call muscle gas—to our muscles because of muscle receptor destruction by antibodies. When the overall muscle supply of acetylcholine is too low, our body literally wants to put us to sleep.

And it's not only how much acetylcholine we have getting to the muscles, but how much we use up and how quickly that affects weakness.

Napping is one of the first signs of MG!

If your chest wall muscles are really weak, then MG can make breathing while sleeping worse. It's possible to have hypoxemia (low oxygen levels) while sleeping. Everyone's muscles get weaker while sleeping, but it's worse for people with MG. Some people with MG also have sleep apnea, which is a separate issue.

The best thing to do is to see a pulmonologist, especially one who is a sleep specialist. They can assess your breathing, including the MIP and MEP tests (they show how well you can breathe air in and out), and know when you are getting worse. That's an aspect of MG that a neurologist can't and shouldn't try to assess and manage!

Since we're in summer and it's hot out, you need to know that when the body is heated up, MG can get exponentially worse! You should stay as coolish as possible! Since you don't have a treatment, yet, you need to take it as easy as you can. Some people who aren't diagnosed or treated yet can get what's called a MG crisis. It's when the muscles get so weak that you need help in an ER—as in dialing 911.

If you can't swallow OR can't breathe well OR can't move well in general (like you're moving in quicksand), then it's time to dial 911. It doesn't matter if you don't have a diagnosis yet. Weakness can become severe and quickly if you're in the middle of an exacerbation (weaker) or a crisis (much weaker). The best place for you is in the ER.

Don't be scared by that, just be prepared in case it might happen!

Antibody activity does NOT necessarily correlate with MG severity. So there it doesn't matter if the antibody level is not skyrocketing! That's a mistake that many regular neurologists, who are not MG experts, can make.

And there's really no such thing as "mild" MG. Why? Because MG is all about becoming weaker with activity. It fluctuates greatly depending upon what you're doing and your overall health or other conditions.

MG is highly unpredictable. A person can do something one day, and then be weaker the next, and even weaker the next day! I call that "two day payback." I don't know why that happens, and it probably doesn't happen in all MGers, but you should watch for any patterns of weakness after you do activities to see what your typical pattern is. But, remember, MG can always surprise you!

Is there anything else that you need to know?

I hope you will seek out the help of a MG expert. If you say where you are, someone here might be able to refer you to one.

You could have more than one thing going on. So maybe check in with an internist, too, to have them check you out.

Good luck!

Annie