Besides the droopy eyelid (1 side - upper and lower) I also get a sharp pain in my eye periodically. For the past 2 years my eye doctor has said I have an unusually large optic nerve. My muscle weakness started around the same time, but the droopy lid is only in the last 6 months. He makes me come back every year to measure the optic nerve to see if it gets bigger. So far it has stayed the same. It is the same side as the droopy lid. Coincidence? Is this optic neuritis and is it related to MG? Has anyone have these symptoms?

thanks
kathie

I have lots of eye problems for years and will be seeing neuro not necssarily pain but floaters, weird ghosting, recently woke up with what seemed to be conjuctivitis but optho said was blood hemmorage (very painful for about 3/4 days, solid red on white part - but only on outside part of eye, insid white section stayed white?). I recently started using night mask and now have realized sometimes see strange, bright image when i close my eyes)

The mask is best i have found and from brookstone, totally blacks out and very comfy with memory foam. I had to get something to block light and prevent as much dryness because i wasnt closing my eyes when sleeping

I get bright lights when I close my eyes too. They look like fireworks.

kathie

It is sort of like that. I am going to take that as a good sign that someone else has because the one thing i am certain i have not read anywhere about mg is that it causes blindness or vision loss! That would gave caught my eye! So i will think it is just over tired eyes

I don't have a firm diagnosis, but I have droopy eyelids and face and lots of other fun things, but I have eye pain every single day.. usually at the end of the day when I move my eyes (extraocular muscles), they are just sore, and it's like I can't move them all the way by the end of the day.. I have ghosting/double vision as well, also I don't close my eyelids tightly at night when my symptoms flare, so I can wake up with some dry eyes! These symptoms all vary greatly from one day to the next!
I also have a wierd thing where if I concentrate on something up close and then try to focus on anything else, my eyes take minutes (like 5 minutes) to adjust and work again.. so strange!!!!

Kathie, You seem to have more than one area with possible nerve pain. Have you had your B12 checked?

And the lights you are describing - have you brought that up to your neuro? It could be a circulatory problem and not have anything to do with MG or nerves!

Guys, do not assume a new problem is related to MG. Seeing lights or having eye pain is not normally a symptom of MG. Sure, when the eye muscles get weak, you can have pain but, again, don't assume that.

Have you guys ever seen a neuro-ophthalmologist? They can do more specialized testing to see what's really going on and/or how bad your double vision is. Sometimes it helps to see doctors other than a neurologist.

Annie

Thanks Annie!!
I saw a neuroopthamolgoist twice in the past year.. it is funny, i had noticed my droopy eyelids since my symptoms first started (I got out of the shower and went to put my makeup on and thought, huh, that's odd).. the neuro opth was the first dr to notice my ptosis (and I didn't even mention a word to hiim about it).. he noticed eyebrow and eyelid ptosis.. also that I had a little optic atrophy on one eye (consistent with past optic neuritis - though he said it was mild)>...
Apparently those neuroopth dr's see a lot of wierd stuff, so they seem to be pretty good problem solvers.. there are only 6 of them in the whole state of texas!

I HAD TERRIBLE EYE PAIN DUE TO MG - COME TO FIND OUT MY EYES WERE WEAK THEY WERE "SWIMMING" IN MY HEAD. LOOKED IN THE REAR VIEW MIRROR (WAS PICKING UP MY SON @ THE TIME) TO FIND MY EYES GOING EVERYWHERE! SCARED THE BEEJEEBEES OUT OF ME!

IT MAY JUST BE ME - BUT TRY LOOKING IN THE MIRROR TO SEE IF YOUR EYES ARE VERY, VERY WEAK!

HOPE THIS HELPS!
ERIN

I have had so many blood test in the last 6 months, but they did not test for vitamin B12. I have seen a lot of articles about the correlation of B12 deficiency and a lot of the auto immune neuromuscular diseases, so I was going to ask for one at the next visit. I have been making the round of specialist and blood test and have finally been referred to a neurologist for expected MG. I had to wait over 2 months for the appointment and still have another month to go for the appointment. I have tried other neurologist, but some won't even take me when I say MG and the other have at least a month long wait too. I have a call into Jeff Univ Hosp to see if they will take me and I am still waiting to hear. I think I will try to get a referral to a neuro-optomologist in the meantime. Maybe with all the new eye symptoms they can get me in sooner.

I can see the droopy lid in the mirror. Sometimes I even see the inside of the lid reducing my vision realm. I know I have double vision. My daughter has even see my eye going in opposite directions, but that is rare. The more I talk about it, the more I convince myself that I should see a neuro-optomologist while I am waiting for the neuro. Thanks for the suggestion,
kathie

neuro-optomologist is great idea. He gave me my first DX. One small test you might try is the crushed ice test. When your eye is drooping hold a plastic bag of crushed ice on your eye for about one minute then check to see if your eye is still drooping. If it improves this is pretty definitive of MG.
Mike