I saw my regular neuro today, who to my great relief accepted the Boston neuro's diagnosis. I am seronegative, my other SFEMGs were inconclusive, and my symptoms are atypical (my worst one is a swaying gait). So I was hard to diagnose. Here's what I learned:

--the Boston neuro who did my SFEMG did a special kind called a "stimulated" SFEMG. Instead of clenching my muscles, he had electrodes on my face. Evidently there are only a few doctors who know how to do these. It must be quite a test, because to him it was very clearly abnormal, though the regular SFEMGs on my arms and legs came back inconclusive. I highly recommend this doctor, who is experienced enough to make a clinical diagnosis under such circumstances. Anyone who wants to know details about him can send me a private message.

--the pulling in my eye may have been caused by the Mestinon. I haven't had it since I went off the Mestinon, anyway.

--Imuran is a good treatment for someone like me whose symptoms aren't urgent. I breathe and swallow fine, and I don't fall. I prefer a safer, slower treatment under these conditions, which made sense to my neuro.

--He thinks I should take the Mestinon even though I'm not convinced it's helping. It may be that in conjunction with the Imuran, it will help, and that will allow me to take less Imuran. Makes sense to me.

--I have Cogan's lid twitch. The Boston neuro caught it. My regular neuro hadn't heard of it. I think Annie on this list has described it. Look down. Now look up quickly. If you have Cogan's lid twitch, your ptotic lid will go up higher than your other eyelid before settling back down into its old ptotic state. Since I don't have noticeable ptosis--maybe a touch, or maybe my left eye was always like this--it's super-cool that the Boston neuro caught this!

--my current neuro knew enough to have my blood tested to make sure I can tolerate the Imuran before starting me on it. Annie warned me about that. While my doctors are secretly studying me, I am secretly studying them <evil laughter>. I'm happy my neuro passed.

Abby

Abby, Can you clarify what you mean by the "clenching" and the difference in the tests? Do you mean how we patients have to sustain a contraction of the muscle group they are testing?

Many doctors in Europe use magnets instead of needles. It still hurts though (yes, I've had it done both ways).

Is there a name for what was done?

Cogan's Lid Twitch

http://www.mrcophth.com/ptosis/myastheniagravis.html

http://www.ncbi.nlm.nih.gov/pubmed/17374543

Which is different than . . .

Enhanced Ptosis

http://www.medscape.com/viewarticle/410859_3

You had a very good doctor who knew the subtleties of MG. But the ones I saw knew of them too . . .

Annie

It had needles, just like the SFEMG I had before. The only difference was that in the regular SFEMG, I had to sustain a contraction in the muscles, like you say. In the stimulated SFEMG, instead of telling me to sustain a contraction, the doctor used the electrodes to make my muscles twitch all by themselves. Does that make sense? I don't know why he did it like that.

Abby

Well, because when you contract a muscle, it can give a false positive or a false negative. I find it completely interesting that they are so 100% sure of how they are doing a test and then backtrack and say it may not give them the best results.

When they do a muscle biopsy, they can actually stimulate that muscle to see what happens. In essence, this is the same thing without the biopsy.

This is off this topic but I had to comment on it. Whose to say that MG affects ALL 640 skeletal muscles equally? Lupus doesn't cause inflammation in some kind of obvious, same old/same old pattern in everyone. Even breast cancer has different "species" that affect people differently.

You know how doctors like things in an easy algorithm. Your particular MG, I believe, is simply a unique variation on a theme.

Annie

So the stimulated SFEMG is more accurate! My regular neuro said that there aren't many doctors who know how to do it (and my regular neuro is an expert in SFEMGs that work by contraction). That's good to know. It gives me more confidence in my diagnosis.

I am actually guessing that the stimulated SFEMG is much more accurate, because it revealed a very clear abnormality in the muscles around my right eye, where I have had almost no symptoms at all; whereas the regular SFEMG wasn't conclusive, even when used on my arm and leg muscles, where I do have significant symptoms.

Of course no one can give me a SFEMG on my side muscles, which are the ones that are most affected. It's evidently just not done. My regular neuro said there just isn't data on what's normal for those muscles.

Abby

And any EMG done around the heart/lungs can be dangerous.

I don't know for certain if that way of doing a SFEMG is more accurate but I find it interesting how trends in medicine go.

You would think that if a muscle is being contracted and acetylcholine is being used up that it would be accurate. There are simply too many compensatory mechanisms which may interfere with an accurate result under those circumstances. But, hey, I'm no where near an expert on this stuff. Maybe contact Prof. Erik Stalberg, who invented the SFEMG and ask him.

It's just great that you got a diagnosis.

Annie

I've read enough stories here to know not to take it for granted, especially since I seem to be atypical in just about every way! I also hope that my doctors' experience with me helps the next patient who presents with weird symptoms.

Abby

Years ago with my first doctor, he did a test with needles and electricity. If that is a SFEMG, then it can be determine whether you have peripheral (side) muscle weakness, because he determined that I had peripheral nerve weakness.

He had a very thick accent, but I "think" he diagnosed with Charcot-Marie Tooth Disease (CMT). All I remember hearing him saying was some acronym that started with a C, and that the muscles will get weaker as I age.

I did some research and I have many signs of CMT, but I also have a very enlarged thymus and difficulty breathing.

I guess there is nothing to say one can only have one disorder in their lifetime.