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Moonmark

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Hello, again--

I am back with a question for anyone who wants to respond, those diagnosed with ALS or undiagnosed, or diagnosed with something else. anyone!

Has anyone experienced chronic, nonstop eyelid twitching? I have had facial twitching which started in my chin many months ago. for most of the summer and part of the early fall, I had twitching around my mouth on one side of my face and then in my cheek, but that has gone away. Then it went into my lower eyelid, then gone. Now, for the past month, I have been plagued with daily almost nonstop twitching of the upper right eyelid, all the way from the lashes to the eyebrow. it is driving me nuts and seems to be worsened by reading or using the computer. it is so strong that it makes my eye move on that side. I still have some off and on twitching in other places, but so far, nothing of the magnitude that has happened in my face since this all started.

has anyone experienced this? I have read about hemifacial spasm and this seems to fit, to some degree . . . I believe this indicates something other than ALS going on, perhaps MS, which has been suggested as a possibility to me by the neuro, since I do have a few scattered lesions on the brain MRI which, however, the neuromuscular specialist did not think were consistent with what is typically found in MS. Increasingly I am thinking that something else is at play here, because some of the problems I have had, which started a little over a year ago now, have had a waxing and waning quality, which I know would not be indicative of ALS. plus the EMG was normal back in June. not sure what I should do about the latest bout of annoying twitching in my eyelid. report to the neuro? call my primary care doctor? go back to see the opthamologist that I saw when an optician last spring noted swelling of the optic nerve? The eye doctor said at the time he thought that was benign and unrelated to the other muscle weakness, twitching, etc. that was going on. I think the hemifacial spasm requires an EMG of the facial region-- anyone had this?

any thoughts?

thanks--

Sandra
 
hi sandra.
what you describe sounds like hemifacial spasms,though text books say they start around the eyes first.
have you mentioned these to your neuro?

i'm not sure about swelling of the optic nerve but the optic nerve being paler is a sign of inflamation relating to ms.
my neuro checked each time during my undiagnosed years when considering ms.

i get facial spasms on my right lower face and jaw line sometimes,i think mine are possibley myoclonic as they visiably distort my mouth pulling the right side in towards the left.
also i get more myoclonic jerks in my right side of the body.
i have pls so myoclonus is to be expected.

keep your neuro informed about these things,they could be that bit of puzzle that completes the picture.
 
Sandra, for what it is worth, at one point in my life about 15 years ago, all 4 of my eyelids twitched almost constantly for 4-6 months. (I was married too so the constant winking at girls never got me anywhere.) This was well after my body-wide BFS that started when I was 21.

Anyway, after that time, in which I had learned to pretty much ignore them, they stopped. I rarely ever get an eyelid twitch anymore. Crazy stuff huh?

Hang in there.
 
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