Hi, Poorman.

There are three different antibody tests for MG: AChR (acetylcholine receptor), MuSK, and LRP4. Even if someone tests negative to all three of those, a person can still have MG. MG is a clinical diagnosis that is confirmed with tests. The hallmark of MG is fatigable muscle weakness that improves with drugs or rest.

Don't get steroids online! First of all, that drug would negate any autoimmune findings. You need to prove what is going on first. What someone might do is a Tensilon test, ice pack test, or a trial of Mestinon.

Steroids are not a great drug. Some doctors dole them out as if they are candy. They come with serious side effects and long-term consequences. The drug is very difficult to come off of, mainly because they shut off the adrenal gland function. The adrenal glands tend to not work easily after taking steroids for a long time.

Do you have a copy of all of your test results? If not, get them.

Ptosis is the same as droopy eyelids. Double vision is caused by ptosis. Double vision in MG happens when the muscles around the eye are not working the same way on each side. MG double vision is called binocular DV. When one eye is closed, the double vision goes away.

There is also something called enhanced ptosis. If someone has a dominantly droopy eyelid, pulling up on that one for a few seconds will then cause that eyelid to go up and the other to go down. They can do a seesaw for a bit.

Have you been checked out by a cardiologist? Since this is happening after exercise, one might think MG. But there could be something else going on.

Have you taken photos of your face in the morning and then after an activity?

I don't know what is going on. Only a doctor can determine that. But I do know that throwing a drug at an undiagnosed issues can be dangerous. I can appreciate that this condition is bothering you. But don't make things worse for yourself by taking matters into your own hands. What if steroids make things worse? They affect many systems in the body, including the heart.

Did you see an MG expert?

I hope you can find some answers soon. MG is a disease that many doctors don't really know details about. Unless a doctor sees a great deal of MG patients, they don't know the depth of MG presentation, diagnosis, treatment, etc.

Can we help with anything else?

Annie