Meech, Welcome to the forum! Everyone is encouraged to post on NeuroTalk, whether they know what's going on with them or not!!! That's why it's such a great place.

A drooping eyelid is not normal, no matter what the cause. Have you noticed if your eyelid fluctuates? Does it go up and down?

The hallmark of MG is fatigable weakness. That means that the more you do, the weaker you get (relatively). And a MG patients gets better when the rest or sleep (or with drugs).

A neuro-ophthalmologist can also assess your ptosis (drooping eyelids) and tell you if they are fatigable. You could also do an upward gaze test, where you hold your head still while you look up with your eyes. I hate that test! It's always hard to do. Look in a mirror before and after to see if you notice a difference.

If your eyelid(s) becomes worse, try a cold washcloth on it to see if it then becomes better. That's basically an "Ice pack test," but without the ice. MGers temporarily improve right after that.

You might also take photographs of your face to see if it becomes worse at the end of the day or after an activity. Try to take the shots in the same location, with the same lighting and head tilt.

Are you short of breath at all? How is your swallowing? Does your neck ever feel weak? Jaw?

MG often begins with the head/neck area. You might want to start a journal to log any unusual weakness or other symptoms you're having.

Some people with MG don't test positive on a regular EMG, but some do. The same goes for a RNS or Single Fiber EMG.

Did they run the MG antibody tests? So far, there is the Acetylcholine Receptor Binding and Modulating antibodies and the MuSK antibody tests.

Make sure they check your vitamin B12 level. Sensory changes are not a part of MG. They might be thinking about multiple sclerosis, too. You can have more than one thing going on at once! Many of us do.

Also very common is celiac disease and a vitamin D deficiency. Do you have any digestive issues?

BTW, even if you don't see your neuro until then, you can still get copies of any test results! So get your medical records!

I hope you will get answers soon, but sometimes this can take a while! Keep asking questions. This group is great!!!

Annie