Ally, First, I think it might be good to take a deep breath and take a step back. You know I know how hard that is after all you've gone through but it might help. Bottom line is that you had a POSITIVE SFEMG! So that does indicate MG.
The following all depends upon your age, because that's how the MCD is set up in Erik Stalberg's book and is accepted as "the way it is" since he invented the SFEMG. Yes, there are standard "cutoff" ranges for most muscles that are standardly tested. And they test those muscles ONLY because they don't have MCD's for all of them. On the list in Stalberg's book, there is listed the Tibialis anterior, however. Otherwise they are mainly upper body muscles.
Frontalis Muscle: These are what the "average" mean consecutive difference (MCD) is for age groups (normal readings):
Age 30 MCD of 34.4
Age 40 MCD of 35.5
Age 50 MCD of 37.3
Age 60 MCD of 40.0
33% of pairs done - not knowing how many pairs were done - is a clear positive result. Your MCD must've been at least in the range of 51 - 150 (they don't count anything over 150 MCD), for the frontalis.
I'm no expert here, okay, and evaluating this stuff is complicated. The reason they say "borderline" is that in medicine there is always a +/- in tests. 11% is slightly increased and may be considered borderline because there may not have been a huge increase in MCD.
What your results are not showing - and what doctors don't show - is exactly what all the MCD's were. What if all the MCD's for the orbicularis oculi, which has an average of 40.0 for someone who is age 30, were all 55 MCD? What if none of them were higher, like 75 MCD? That would lead someone to conclude that it consistently tested on the low end.
Does that make sense? Do you remember bell curves (see below example)? It's how tests were graded way back when. They averaged the "average" kid's scores to get the grades - not very fair. What I think they need to do with the SFEMG MCD's is separate not only by age but by sex. Your average may not be the same as someone else. You are being judged by a group of people's "average."
I'm going to do something very uncharacteristic; I'm going to defend this doctor. If this doctor is an MG expert, then you went to him for that advice. If he is not a neuromyotonia expert, then he would feel out of his league in answering any questions about that. All neuros don't know everything and they hate to admit they don't. Yes, he should've at least commented on the leg issues and given you an idea of what to do. But if he was not comfortable addressing it, because it was outside of his knowledge, then he should've given you an idea of who could do it. If he even knows anyone who does, since not many people do!!!
Did this doctor say that you have MG?
From what I know of all your test results, it looks like you do have MG. Is that what you gather from it all? I don't know what other disease you were thinking of instead of or in addition to MG. It's always possible to have more than one.
Don't blame the doctor so much as "doctoring." There should be a place to go when a patient is undiagnosed, where they figure out what is wrong with you NO MATTER WHAT. That place does not exist yet. Aren't we lucky.
I'm sorry you don't have answers for everything. But it sounds like you have one answer. Maybe you can ask the local neuro to do a regular EMG on your legs when they are bad.
I've lost loads of money too on doctoring. You know the docs in your area are covering their behinds because they missed things - they even tried to get you to sign a waiver, getting them off the hook. They are all afraid of being sued.
Only you can decide what you do from here on out. You should feel good about the fact that you do have very positive results, which I think is worth the money. I'm sorry you didn't get everything you needed but maybe if you ask this doctor to at least comment in writing on the legs in greater detail, that might help.
I don't know what to say. I've lost a lot of faith in doctors and doctoring. I haven't lost faith in you and in the fact that it's obvious you have MG and probably something else going on. Maybe take some time to think and regroup, gather up what you do know and go from there.
My heart goes out to you.
Annie
http://emedicine.medscape.com/article/1832855-media