For those of you who have eye troubles - what were your first signs? I've had some muscle twitching occasionally in the past. But the last few days it has been really frequent and irritating.

No double vision - but sometimes blurry for a few seconds following what feels like deep muscle spasms. Rubbing doesn't help -- sometimes it feels like my eyes can't get 'back to center' when I open them up after a good rub.

I've tried to peg it when my last Mesty was but there is no relationship there.

I've even tried to see the twitching in the mirror and can't. For something that feels so dramatic on the inside - - there's nothing on the outside!!

Thoughts anyone?
Thanks,
Sue

Hello sweetie! Actually my eyes were the first to go! What you are saying sounds so familiar.

I started having terrible headaches after a trip to Belize and my eyes felt "fuzzy" for a long time. I tried to explain to my family that there were times when I couldn't even see but no one believed me until they started to roll around in my head - people could "SEE" that!

I have learned that a cool compress helps a lot. I keep one handy in the freezer for my bad days....

Other than that, how are you? Are you feeling better? I've missed all of you so much!

Love,
Erin

Hey Erin!

Glad to have you feeling well enough to post lately! Overall I've been feeling tired - thought it might be that I'm fighting a sinus infection. In fact, I was hoping to pawn off the 'crazy eyes' to that!! But, nothing has developed over that last week, so I'm stuck with hoping the eye thing isn't the MG!! (I know everyone can understand my strange logic here...lol)

Thanks for the info - - I'll just have to wait and see, no sense looking for trouble ahead of time!!

What about you dearie!! When do you go to Mayo Arizona? You have been through so much in the last year alone - I don't know how you and your family cope. But I do admire you for handling it all without bitterness or hopelessness. Something really good has got to be waiting for you in 2010!!

Sue

Suev,

About 8-months before my speech was affected, I'd get twitching in my left lower eyelid constantly...It lasted for about a month and a half...I'd also get blurring, or ghosting trails of images when I'd turn my head really quickly...One time, I woke up and tried to look around and it caused a lot of pain (like a bad cramp in my eye) and felt like my eyes were sorta stuck...Way before that, I'd occassionally have mild DV when reading late at night, and I'd have to close my right eye tightly while reading...I just thought that I needed glasses...

Anyway, that's about the extent of my eye troubles...I now have trouble closing them all the way when I feel very weak...

Suev, do you mainly have limb weakness?

Hi Nick,

Yep - mostly right arm and legs. But when dx'd, my neuro pointed out my ptosis and weak eyelids. Said it wasn't obvious because both eyes were slits!! not just one.

It's only been in that last few months that I have had some hit and miss incidences of lazy swallowing or minor eye twitch. Now the eye thing is not hit and miss...it's irritating. I don't have any dv or blurriness, but there are times after I take Mestinon it feels like I have just cleaned my glasses!!

I have a check up in March. If things change too much more I'll call in before then. Maybe I just need more Mestinon.

Thanks,
Sue

Sue,

I think we all get this, with or without the mestinon. Sadly I don't know of anything to relieve it. Maybe as Erin said, use cool compresses.

I hope it stops and you get to feeling better.

Yes, my eyes get twitchy a lot, but as you said it's not noticeable when you look in a mirror. For me, fluorescent lights, bright sunlight, extreme cold and heat, and too much computer time seem to be triggers. The lights in grocery stores are really bad for me.

Oh yeah....Bright lights kill me too...Especially fluorescent, and yes, the grocery store is brutal...Sunlight pulls my eyelids down like a magnet.

Do any of you get excessive tearing? The wind blows even the tiniest bit, and my eyes water like mad....

Suev, it's weird that it happens after you take the mestinon...Maybe the mestinon's doing it...I think that a working muscle, or one not very affected by the MG or affected at all, for that matter, might be negatively affected by the mestinon...

I don't normally have a lot of ocular sx--I have the generalized type of MG, but sometimes my eyes are kind of weird. Sometimes they feel like they are going to cross, and they kind of ache and burn when I'm reading. I find myself blinking hard sometimes or having to just close my eyes sometimes. And if lights are very bright, as others have talked about, I have a lot of problems--sometimes my eyes just want to close in bright lights, but even before I had MG my eyes were sensitive to light (I have blue eyes), it's just that they are somewhat worse now.

the first MG symptoms I had (in retrospect, as at that time I did not even think of MG, nor did the eye doc. I consulted) was blurring of my vision when I tried to look at the microscope.
I was quite sure that I had some occlussion of one of my blood vessels and was extremely relieved to know that I did not.

initially I only had those obscure symptoms, when I looked at the microscope. and it took me quite a while to understand, that the reason for that was not "psychological" but due to the bright light!

after trying, quite unsuccessfuly (with the aid of a psychologist) to "figure out" why I became "afraid" to see my patient's samples and reach the proper diagnosis, to the extent that I "developed" somatic symptoms, I realized that I can "cure" my fear, by decreasing the brightness of the light.

by the way, it was eventually found out (by an excellent neuro-ophtalmologist) that my illness affects also the muscles of accomodation ( a rare, but described involvent of MG), and that was initially more pronounced leading to more blurred vision, and less obvious diplopia or ptosis (although both were present, but to a much lesser extent).

alice