This was not an SFEMG. He did not use a needle-type on me. It was stick on electrodes on my hands/arm, and the shocker held on up by my elbow, that looked like what you attach a nine-volt battery to, only bigger. Same thing on my face, stick on electrodes around my eye, in several positions, then on my nose, with the big shocker thing held against the back of my jaw/cheek, near my ear.

On the fourth round on the first side of my face, he said, "we're running out of places to try". I said, "Good!".

Resident was actually doing the test. Big name doctor was standing off behind, leaning against the wall, watching the screen from over the resident's shoulder, telling him where to try next.

And somehow, they left a bunch of scrapes wherre the shocker was, on my right elbow. I have a series of small cuts about a half inch or so apart in width, about where either side of the thing was.

He did give the results, right then. Said he wasn't seeing anything to indicate MG, which is what he had already said and decided after the initial visit, with all the 'push against my hands' stuff. But for the first visit, they told me to take the mestinon before coming, and time it so it was at full effect. Mestinon works wonders for me. So, yes I was able to push and hold. No, he did not see much in the way of signs of weakness. BECAUSE I WAS ON MESTINON AT PEAK TIMING AND THE STUFF WORKS WONDERS FOR ME. But he discounts that and says I don't show much in the way of MG signs. Even still, I was having to stop mid-sentence and catch my breath the whole time. We even talked about that. yet, in the visit notes, he says I had no shortness of breath and spoke in complete sentences without trouble. And he wrote I walk steady and normal and without assistive device. No--I use a cane and do not walk normally and am not steady. I have even fallen, last time nearly breaking bones as I was at the top of some stairs (and landed on my face by the bottom.)

When he referred me to the neuro opthalmologist last fall, I had them read me the referral. The words were "I really don't think there's any signs of MG, but tell me what you think." So the n-o did not do more than wave his finger left to right, top to bottom, and towards my nose, ONCE each direction, put ice on one eye (that was not having ptosis problems at the time, or ever) and declare No, no MG. Seriously, that was his whole exam of me, other than all the expensive photos and visual field tests he had his people run (which were repeats of the same tests I brought with me from my several ophthalmologists, none of which he paid any attention to, nor their notes.)

The come back for the summary is after I get the LRP4 test and one other he wants, done. It took me 14 months to get the MuSK approved. Absolutely no help from this facility, their Authorization department only does big things like MRI's and CT's, nobody does bloodwork even if the single test does cost $1700. Now, I have to get the LRP4 approved before I can get it done. THEN I am supposed to come back so he can make his grand pronouncement, even tho he has said he really doesn't think it's MG. And several times started to say that he didn't think I should be on mestinon even tho it makes a huge difference in me. A difference that people who barely know me have commented on, it's so obvious. But I don't have a positive lab test of any kind. And he didn't see signs of MG because he only looked when I was on full dose of mestinon. And ignored and denied the signs that were there, like being so short of breath it interrupted my speech.

All indications say he is going to declare that I don't have MG, and that my regular doc should take away my mestinon, even tho it has a massively positive effect on me (which he does admit to.) WE asked, okay, if it 's not MG, then why does the mestinon give such positive results? What else does mestinon treat? And he fumbled and evaded and talked circles and diversions, and my husband kept putting the question to him, and finally he said, "it treats a number of other things....such as low blood pressure...and, um....um...." And hubby went, "Really?" in an incredulous tone, and doctor just looked at him, embarrassed face, mouth open with nothing else to say.

I asked, more than once, well, if it isn't MG, then what is it? If it isn't MG, if the last tests are negative, then what comes next, is there something to proceed with looking at, or am I just done? And doctor refused to answer. Would not even say whether there was more to look for, other things or whatever, or if it was the end of the road with him. REFUSED. Did repeat, "I am just a consultant" and "Well, you came to the Myasthenia Gravis center" so clearly asking about anything else is out of line. We then asked if he could recommend a doctor or place to go to get further investigation if it is not MG. Again he repeated the "I am just a consultant, and that is not my responsibility" to us. Unreal.
I will only get an answer to whether there is anything more to be done, or to look for (as in other causes) after I have the last two blood tests done, and he gives me the summary. Well, I already know the results and his thoughts on everything up to now. He told me the results of the EMG. He has said his impressions of the initial exam, AND I have the visit notes he wrote up and had in my file. I have the results of the blood tests. I have what he told the neuro-oph, 'i don't think so, but tell me what you think'. So, why should I waste the over 5 hours it takes, between driving time and time sitting there, which costs us at least 1/2 a vacation day from my husband's job so he can take me, to be told he doesn't think it's mg and go away? I know that already.

And when he sends his final letter to my regular neuro, saying he, the big name MG guy, doesn't think it's MG (because he only wants to see a positive lab report telling him so) and she should stop my mestinon, then what do I do? It works. Without it, I can't even brush my teeth without leaning over so I can rest my arm on the sink since I can't hold it up long enough to brush, in fact, I have to rest my whole body against the sink to stand there long enough. I can't keep my arm up long enough to brush out my hair (which I had to cut short because I was too weak to take care of it) without the mestinon. I can't talk. I can't do anything because it is too hard and I am too weak and need to spend more time resting than doing, without the mestinon. So, what do I do, if I let him finish me off and send that final letter and take away the only thing that works for me?