Hi, Psychitect. No worries. We are all busy and do the best we can, right?
Mayo invented the ACh test and some labs (Quest, for example) do not do as accurate of a job analyzing the results! Also, antibodies can be "tissue bound" or they can "circulate." Maybe yours are too busy attacking tissues to come out to play for the antibody tests. Antibody tests fluctuate (which is normal) and they might be positive later on. It might be worth redoing them in 6 months to see if they've changed.
If any of the ocular muscles are weak, there will be focus issues. That ALSO means that you have double vision. You might not even realize it. I had it my entire life and thought it was only blurry vision! It wasn't until I saw a neuro-ophthalmologist that he showed me clearly (via visual tests) that I had double vision.
MG double vision is called "binocular," and when you close one eye, it goes away. In monocular DV, which has other causes, it doesn't.
It's good that you have an answer. A regular EMG is not as specific for MG, but if they are confident you have MG, then that's great! Well, great that you have the diagnosis, not the disease!
I laughed out loud when you said that about the SFEMG needle "shortage." What they really have a shortage of is TIME (time=money). The test itself takes a long time to do (well), plus it takes additional time to evaluate the results. They really should tell doctors that lying isn't an attractive trait to have (no offense meant to your doctor).
Some background info.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3108086/
http://neuromuscular.wustl.edu/mtime/mgdx.html
Were you in a "booth" when you had your breathing tests or did you just have a handheld breathing device? If it was handheld, chances are that you had a very rudimentary version of MIP/MEP. Did they do the breathing test at your bedside? That's often called a bedside spirometry and, again, is not as accurate as the standard MIP/MEP.
I HIGHLY recommend getting in to see a pulmonologist right away. Please, don't mess with your breathing!
The fact that they did not continue treatment for you when you are clearly in an MG exacerbation is beyond unethical. And dangerous. Stopping treatment because you're about to have a test is pretty risky. I do understand needing a diagnosis, but now you've had the test and need treatment!
I cannot believe the lack of commitment to a patient's well-being here. Call back and ask to speak to the clinic's administrator (if you want to).
If you are having that much trouble breathing (or swallowing or moving), then you do need to dial 911 and get help from the hospital. MG is nothing to mess with and you need further medication. I'm glad you're taking it easy!
What else can we help you with? There's a lot to learn about MG. And even with meds, you can't "push" this disease, because it will push right back!
I hope you can get someone to help you soon!!!
Annie