Hi. I know how hard it is to get a diagnosis sometimes. I have some tips on that for you.

Have you ever taken photos of your face when you were rested and after you have done an activity (like out in the heat)? It is very telling. I have even gone so far as to line the photos up at the hairline, bottom of ear lobe and bottom of chin to "prove" the photos are the same size. I have then run lines across my before and after faces to "prove" there is drooping of my entire face. It's pretty shocking to look at. My eyebrows, nose and mouth all droop and it's an obvious change.

A neuro-ophthalmologist can assess whether or not you have fatigable ptosis (droopy eyelids). That's one more expert showing "proof" of something going on.

If you are short of breath, seeing a pulmonologist to see if you have neuromuscular weakness that is fatigable is important too. The MIP (maximum expiratory pressure) and MIP (maximum inspiratory pressure) show how well you breathe in and out. Besides just being lower than normal, sometimes the more you do this test, the more the #'s drop. Because in MG, you get worse with repetitive activity. My #'s have shown that on several occasions. Some neuros say that these tests aren't accurate because of "lack of effort" on the part of the patient. Bull hockey. I have done PFT's with the same clinic and they have reflected every single time how I am doing clinically.

I totally agree with these guys that this neuro may be out of his league. MD means muscular dystrophy. Not all MD's are created equally. MG is specifically weakness upon exertion that shows up on a SFEMG as a decrement.

The SFEMG may be the "gold standard" HOWEVER it relies heavily on the ability of the person doing it. There really are not a lot of true experts at doing the SFEMG; those who have done it over and over again and who have great technique. It doesn't "hurt" (but it DOES hurt) to do the EMG, RNS and SFEMG. It sounds like cost might be a factor for you though.

It is NOT hard to distinguish between MG and many other neuromuscular diseases, at least not if you are in the hands of a true expert. ALS may "act" like MG for awhile but not in the long run. Lymes is much different in presentation than MG.

And if you have obvious weakness, there is the Tensilon test. Not as many people do it anymore but it is still done. They inject the faster acting, short-lasting drug into your arm and watch for ptosis to improve. I think they should add to this by taking before and after photos of patients when they do it. Wouldn't that be more "objective" proof?!!!

I hope you will seriously consider finding a better neuro. You do not want to have tests, find out they're negative and then have to pursue help elsewhere. That can get even worse for you! Then docs can have an even worse view of your situation.

Whatever you do, I hope you can get answers. It's so frustrating not to know what is going on with your health.

Annie