I'm seronegative and my first two SFEMG's were inconclusive. In addition, my symptoms are rather atypical. For example, I haven't noticed any eye symptoms.

My left eye opens less wide than my right, but I'm pretty sure it's always been like that. I never notice any variation. But, the ophthalneurologist who diagnosed me wrote to my regular neurologist that I have Cogan's lid twitch, and sure enough, I can see it for myself in the mirror. It looks exactly like the second picture (the animated one) here:

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

I'm just delighted to have something observable. This is so cool.

Unfortunately, I find this study that says Cogan's lid twitch isn't sensitive or specific.

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

Abby (look, I found a Cogan's Lid Twitch Emoticon!)

So, Abby, did you video tape yourself?? I cannot see my eyes doing this -- but, it MIGHT be happening. I remember in the "early days"....................one of the neuros (professor) was showing a resident "something". He had me look up for a couple of minutes -- my eyes got VERY tired. And then, he said, "See! That is a SIGN of MG!" I never knew what he meant. This was the same guy who did a teaching lesson to the resident about double vision. I was having left-sided double vision and the resident was dubious. My eyes looked FINE to him. So the professor turned off all of the lights in the examination room and turned on a pin light. He told the resident to look at the place the pinlight HIT my eyes in respect to my iris. On one eye, it was directly ON the iris -- on the other eye, it was off to the side of the iris. So the resident could then SEE that I was INDEED having DV. Wonderful professor. I've had some good docs!

I haven't taped myself, but I can see it clearly in the mirror, especially in the evening. I just open my eyes as wide as I can and then let them relax, and I can see the left lid go up higher than the right, and then settle back down to a lower position than the right.

My daughter has a very rare genetic syndrome (Alagille's), and her diagnosis was confirmed by a few harmless but very unusual characteristics of her eyes that the ophthalmologist could see. I recommend that anyone with bothersome eye symptoms of MG, or anyone who's having trouble getting a diagnosis, see a neuro-ophthalmologist. Those guys really seem to know what they're doing.

By the way, even though Cogan's lid twitch isn't specific for MG, from what I read, the only other conditions they know about that cause it are diseases that mostly affect the eyes. So I think this helps confirm my diagnosis.

Abby

Maybe it isn't late enough in the day......but, I just looked in the mirror and tried it (three times).....NOTHING!! And, I'm having DV right now. Go figure!! Ain't MG a hoot?!?!?!?!?!

THANK YOU ABBY! This is amazing timing. I think it explains something that happens on occasion and just happened again this morning. Sometimes when I look up, my husbands exclaims "Hey, your eye's better!" I don't even notice it happening, and by the time he's done talking, it's definitely not better. I say, "No it's not!" He says, "I swear, when you looked up your eye was wide open!"

This whole time I've thought he's been imagining things, and maybe he thinks he's caught me faking or something. Can't wait to tell him, and try to catch myself in the mirror or on video.

Tatia

Sorry,

The two things that always and invariably lead to ptosis and DV for me are bright light and flickering objects.

So, couldn't look for long enough at your animations.

But, I too was told by a neuro-ophtalmologist that I have cogan's lid twitch and a few other "classical" ocular MG findings.

It was really funny, because I went to her as she is a colleague I highly appreciate and consult a lot (regarding my own patients) and when taking steroids I wanted to make sure that I do not have glaucoma or cataracts.

As I was there any how, I asked her what she thought about my very atypical ocular symptoms and (according to quite a few leading MG experts) my "non-myasthenic" ptosis.

She did a brief examination after which she asked me what exactly was atypical and what didn't fit myasthenia in my ptosis.

Ironically, the only neurologist that examined me like that, was the one working for my insurance company who was trying to prove that when I made my policy (at that time I was working full time with two young kids) , I knew that I have MG. So, he took every effort to show that contrary to my claim, I have a "classical" case of MG and as I had similar symptoms 20 years before should have known I was ill even if I had complete resolution of all my symptoms and was clearly told by a leading MG expert that I do not and never had MG.

So, he too demonstrated my "classical" ocular symptoms. Go figure this ridiculous disease.