Ally,
I'm just curious about something. Do you smoke or drink coffee, eat a lot of chocolate? We had a thread going awhile back about the effects of these on the EMG tests. All these, it seems, could scew the EMG results, and I may become the living proof of that here soon. If you do any of the above, before your next EMG refrain from smoking for 24 hrs. (MUCH easier said than done), coffee and chocolate for at least 3 hrs, and don't take any Mestinon for 24 hrs. before (unless of course you start into breathing difficulties!).

Interestingly, my first EMG was negative and I had smoked on the way to the test.

When I got my formal DX, I had been in the hospital and no smoking for about 24 hrs.

My decrement was huge! in the shoulder was 76%, face 23%.

My last EMG's showed no decrement - I smoked on the way in having been told it didn't matter when they were checking the peripheral nerves. But I was so weak in the neck and upper back that I couldn't sit up or hold my head up.

I will be going in for an SFEMG soon. I'll be SURE not to smoke or drink coffee before.

I think this is another example of the patient figuring it out before the med community! When I had my first cervical discectomy the surgeon was trying to get me to use bone bank bone for the fusion instead of my own bone. I insisted that my body wouldn't know what to do with super sterile bone because I have smoked for so long. In six months I had fused as well as they generally see in one year.

Guess what! By the time I had my second fusion (4 years later), he said that "they" had discovered smokers heal better with their own bone! And he said it like that's something they figured out on their own: he had forgotten our conversations on my first fusion! UUGGHH! Doctors!

Just a quick disclaimer - I know I need to quit smoking, but I discovered the hard way that most of the quit smoking aids (Chantix, patches, etc) are no no's for MGer's so this is going to take a major psych job on myself and right now all my "psych" is going into staying somewhat functional, and maintaining with docs!

As you can see, even though I had the formal dx in 2004, we are AGAIN trying to confirm my MG before treating (new neuro due to insurance changes). I am learning that even with another docs notes, tests, etc., if a neuro doesn't see it for themselves, it doesn't exist! That puts us all in a very bad place since, as you know, our symptoms wax and wane.

It's ridiculous that we have to allow our symptoms to get so bad before a doc appt (or even push ourselves to an unsafe point before an appt), just because we know if they don't see it, we don't get help! But....that's the way it seems to be. I think once they get me going again, I'm gonna start a grass roots movement to get them to understand that they need to trust the patient a little more!!!

Good luck, Hope you get your dx soon!

Becky