Hi, Kate, welcome!

Wow, you had positive test results and you still aren't diagnosed? I'm not surprised, but that's just an illogical thought process going on in that doctor's mind. He obviously doesn't have enough information, either.

When muscles get really weak, they can indeed cramp or spasm, especially the ocular and hand muscles. What you really need is a neuro-ophthalmologist who understands "fast-twitch" and "slow-twitch" muscles and can look for specific signs of MG, such as Cogan's lid twitch.

http://emedicine.medscape.com/articl...17-overview#a3

There's also something called "enhanced ptosis," which MG experts know about. If you have a dominantly droopy eyelid and pull up on it for a few seconds, that eyelid will go up and the other one will go down. It creates a "seesaw" effect that can go on for a minute or so.

Does putting a cold washcloth over your spasming eyelid stop it? If so, that's called the "Ice pack test" and is used in diagnosing MG in an ER.

Have you had a brain MRI to rule out other causes for the ptosis?

You have more fatigable weakness than only the ptosis! To rule out MG over some spasming muscles is ridiculous. Athletes' muscles spasm, twitch, and cramp up when they overuse them. A MGer just has that happen sooner.

Are you short of breath at all? Any other symptoms?

Were your antibody tests positive (Acetylcholine or MuSK)?

It's possible that you could have one of the Congenital Myasthenic Syndromes, which most doctors know even less about! It's a group of diseases that are genetic, not autoimmune.

I was like you growing up. I did not have any kind of endurance for sports, even though I had the ability to do them well. I didn't get diagnosed until much later in life. Also, I was misdiagnosed with lazy eye/amblyopia when I was 10. Like anyone else, I instinctively adapted my physical life to reflect my symptoms.

Where do you live? Maybe if you tell us, we can find a MG expert for you to see!

Just because one symptom doesn't "appear" to be part of a disease, that is not a good enough reason to toss out a perfectly sound diagnosis! CMS and MG, and LEMS, are the only diseases that have a "fatigable" component to them, meaning that they cause muscle weakness that fluctuates with a sustained or repetitive activity.

PLEASE call your doctor and tell him to look at either Medscape, Mayo, or WUSTL for more accurate information about MG!!!

http://emedicine.medscape.com/article/1171206-overview

http://www.mayoclinic.org/diseases-c...n/con-20027124

http://neuromuscular.wustl.edu/synmg.html

You obviously need some help, and the appropriate treatment.

I would also suggest that you have your thyroid, B12, and D3 levels checked.

I really hope someone will take this seriously. In the meantime, if you get worse, please go to your local hospital if you can't move, breathe, or swallow well!!

Let us know what else we can do for you!

Annie