Ally, Well, I don't even know what to say. It's such a mixed bag of good and bad. I'm glad? I'm sorry? I hope you get answers soon? All of the above!
Yes, muscles can be too weak to test (this is from books and from MG experts). It has to do with, for example, muscles that twitch due to being too weak, which will interfere with the signal. You know how a person shouldn't have caffeine before an EMG - same effect. To me, it sounds like this doctor knew exactly what he was doing. The fact that you had a positive SFEMG is good, in that you had a positive test AND YOU ARE NOT CRAZY!!! Which we knew anyway.
The SFEMG is not specific to MG. I'm not even going to speculate about what else it could or couldn't be - that's up to the uber-doctor. Fatigable weakness is what the increased jitter is showing, so it's likely it's MG. The fact that your frontalis muscle was the most weak means that it is not isolated to your ocular muscles.
Blocking on a SFEMG is not what you want to see! That means there is NO signal, not normal and not abnormal. For example, you could have 20 pairs and 4 could be blocked. There would be a "flat line" instead of a regular waveform. They usually give a percentage of blocking based on that. There isn't enough juice getting to the muscle for them to even read the muscle fiber. So that's actually a good thing.
The antibody tests are not always positive. Shocker.
My uber-neuro said that he can see a patient who is weak as a kitten and have a negative SFEMG and can see someone who looks okay but has a very abnormal one. Same with antibodies. But you have had positive antibodies. Doesn't really matter how high. That's why labs have "ranges" for positive. If you are in that positive range, it's considered POSITIVE! And it may be that the number of circulating antibodies is low because they aren't circulating in your blood! What if there are some AChR antibodies that simply stay in the neuromuscular junction and don't come out to play for that blood test?
I know of a brilliant neuro/MG expert on the East coast who is simply too busy to even eat. That's no excuse not to get back to a patient waiting for results but it also might mean that he is consulting with someone else first. That would be a good thing. Some doctors are not good at being prompt but it's always a mixed bag with anyone of any profession. At least this guy is smart and good at what he does. You do deserve, according to law, to have answers in a timely manner, however.
What pulmonary tests have you had done? The full package or just simple spirometry? Have you had MIP and MEP done?
I'm surprised no one has suggested a muscle biopsy yet, or have they?
So, if one side was too weak to test, does that mean that your arms and limbs are clinically weak?
Ally, you know how I feel on the topic of bad doctors. It upset me so much that I've written an entire book on doctoring (yes, almost done). It's one thing to doubt a disease, it's quite another to doubt a patient. None of us want to be sick (well, maybe a few people do but I haven't met any). I'm glad you are nearing the point of answers and, hopefully, treatments. I hope it's not a dire diagnosis. MND would be very difficult for anyone to get their heads around.
I'm glad you now have a neuro who is in your corner. That helps a lot. I have to say that it will take a long time to get over your doctoring experiences. I hope you will seek out a smart psychologist or psychiatrist because they can really help. But I honestly believe, at least for myself, that the betrayals and the traumas I have experienced have really scarred me too. I even have trouble trusting the doctors who I like and are good.
I hope you get answers soon. In the meantime, do something super wonderful for yourself. Or a bunch of stuff. Make yourself feel completely pampered if you can. My heart really goes out to you for all you've been through. No one deserves it. And let's all hope that Karma will take care of the rest.
Annie
I loved the whale comment. I know, recycle, reuse, save the planet but to heck with us patients.