Welcome, Mommyloves3.

MG is all about muscle weakness that gets worse with activity and better (relatively) with rest. It's pretty unique due to that. Other diseases don't fluctuate so much.

Since you have pain too, did they check your creatinine phosphokinase (CPK)? It's one of the test they do for polymyositis, another NM disease.

The tilt test is not an MG test but an autonomic system test.

They should check the MuSK antibody test as well. And the ACh antibody test can fluctuate. Do you have the copy of the results? If not, get them. Some doctors "pooh-pooh" a lower modulating antibody (even if it's above normal) and take a wait and see approach.

Have you had thyroid tests done? A cortisol level? B12? Though MG does make someone tired as well as weak, you should rule out other causes for it. If you are tired ALL day, chances are it's something like a B12 deficiency. When I had mine, I could hardly stay awake.

Also, a vitamin D deficiency is very common and can cause muscle pain.

The way you describe your symptoms, that you do something and then get worse, sounds like MG. As far as not having droopy eyelids, have you taken photos of yourself in the morning after being well rested and then later in the day? You may not even notice a difference if you think droopy is your "normal." And I had blurry vision that I thought was only my astigmatism but, in fact, it was double vision. A neuro-ophthlamologist pointed that out to me and did the testing that proved that.

If you do have MG, you'll have to be careful. If you get to the point of not being able to move, not breathe in AND/OR out well or cannot swallow, that's the time to go to the ER. We can have what's called a "myasthenic crisis" where our muscles get so weak that we need more care. If you're that bad, don't drive yourself in! MG can get rapidly worse and there's no way to tell when that will happen. Things like stress, overdoing it, infections, getting too hot or cold, not enough sleep and some drugs can make MG worse.

If you want to learn some more, go to www.myasthenia.org

The stickiness of your eyes sounds like Sjogrens. Did your eye doctor do the test where they put the little measuring "sticks" in your eyes to see how dry or not they are? Without enough acetylcholine, eyes can get dry too though.

Since you have shortness of breath, it would help greatly to see a pulmonologist. They can assess your breathing and tell you how bad it is. They can also do more MG specific tests like the MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure) that shows how you are doing at breathing in and out. If you have MG, you really need both a neurologist and pulmonologist. Seeing a pulmonologist would be help to further figure this puzzle out. If you have a breathing pattern that is clearly fatigable, it only adds to the clinical picture. And if you are really bad, they can do an arterial blood gas on you to see how that's affecting your overall body. You don't have to wait until you have a diganosis to see a pulmy!!

It might be useful to see your primary doctor for those basic tests for fatigue and maybe the CPK test I mentioned earlier. You might have MG but you might have something else going on too.

I hope you get answers soon. Are you on any drugs right now that might interfere with a Single Fiber EMG? Steroids, inhaled or tablet? You really should have that test done. In the meantime, take it easy. MG, if you have it, is nothing to mess with or "push."

Annie