[suev]

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

[erinhermes]

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

Originally Posted by suev

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

[suev]

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

[Nicknerd]

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?

[suev]

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

[Joanmarie63]

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.

[KathyV]

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.

[DesertFlower]

Originally Posted by suev

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

Exactly how my double vision started, in fact that is how my MG started...

Now that I have had MG for about 9 months (I think?) when my eyes feel this way it is because either:
1- Too much Mestinon (usual cause)
2- Not enough Mestinon
3- Too much stress or activity

When my eyes feel twitchy from too much Mestinon, it usually starts about 20 minutes after I take Mestinon and lasts for at least an hour and then slowly fades.

If stress causes my eyes to twitch it happens immediately as I experience stress. I have no tolerance for stressful situations, even small amounts of stress. If I don't relax within about 5 minutes, my MG symptoms progress into extreme weakness which is scary.

Twitchy eyes seem to be my first sign that I need to take some kind of action so I don't get worse symptoms.

I hope your eyes are feeling better.

[trobentica]

hey, Nicknerd; i recently found out that electronically anti flicker glasses can be made. they're based on ferroelectic liquid cristals and cyclically counter flicker from discharge tubes...

take care.