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boxer22

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Hey everyone, I have heard that eye mucsles or not involved in ALS, does that mean just the eye ball part or the area around it to? Like your eyelid and underneath your eye? Are they affected? Thats how one would blink I think. Just another quick question, I have teeth marks or what looks like that on one side of my tongue but i never bite my tongue so could it really be teeth marks? Sorry for all the questions.
Ashley
 

Rhonda

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My eyelids were not droopy until the ALS affected my face. I may have surgery to cut some of the skin out. They are heavy at times and sometimes in the morning I have to use my fingers to open my eyes. I use eye drops at night because of dryness. The eye doctor put a plug in one tear duct in each eye and that has helped some. It has affected my lips also, they look like I'm frowning all the time.
Rhonda
 

patricia1

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droopy eyelids

I thought droopy eyelid is myastia gravis Pat
 

ltr

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My neuromuscular clinic told me that any of the neuromuscular diseases can effect the facial muscles, causing drooping. If you look at the thread under the general section about women with MND's, some of them talk about their eyelids drooping and that insurance will pay to have it fixed. With my myopathy I have noted my upper eyelids drooping some and Annmarie had me check out MG and that was the direction I was going. So, since the facial muscles are voluntary, they are effected too.

Ashley - myopathy causes the eyeball to hurt in some people. I have knife like pain in one of my eyes and sometimes the muscles ache when moving my eyeballs. Is this what you mean?

Leslie
 

boxer22

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ltr said:
My neuromuscular clinic told me that any of the neuromuscular diseases can effect the facial muscles, causing drooping. If you look at the thread under the general section about women with MND's, some of them talk about their eyelids drooping and that insurance will pay to have it fixed. With my myopathy I have noted my upper eyelids drooping some and Annmarie had me check out MG and that was the direction I was going. So, since the facial muscles are voluntary, they are effected too.

Ashley - myopathy causes the eyeball to hurt in some people. I have knife like pain in one of my eyes and sometimes the muscles ache when moving my eyeballs. Is this what you mean?

Leslie


Hi, No its not my eye ball but under it and above it twich literally like 24 hours without stoping no matter what i do, it just wont go away, its like that on my face calves, and hands, even moving them does not make them cease. But When i am lying still on the bad for a while after waking up they seem to be not as frequent but the minute i get up to go to even just the bathroom they are up and jumping around agin and dont slow down until the next time i wake up. And Going to the bathroom is not over doing it so it cant be the over doing it thing lol, really, i am just at a loss here.:confused:
 

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Hi Boxer. Constant twitching of the muscles aroudn the eye must be really annoying. I wonder if you Doc can suggest something to relieve it? Cindy
 

boxer22

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CindyM said:
Hi Boxer. Constant twitching of the muscles aroudn the eye must be really annoying. I wonder if you Doc can suggest something to relieve it? Cindy

Hey cindy,
He gave me a muscle realxer but it does nothing, i mean nothing lol . It is really annoying my husband looks at me funny sometime when i am talking to him because its just twiching so bad.
 

CindyM

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This has caught my imagination as it seems like it should be easy to at least relieve. I have twitches all over but I have learned to ignore them. Not sure I could do that if it was my eye. Did an MRI show anything? EMG?

Even if it benign, I bet you want it stopped. I wonder what the holistic and alternative folks have to offer? (Not quack therapies, please! I mean your local town acupuncture place.) Just a thought...Cindy
 

boxer22

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CindyM said:
This has caught my imagination as it seems like it should be easy to at least relieve. I have twitches all over but I have learned to ignore them. Not sure I could do that if it was my eye. Did an MRI show anything? EMG?

Even if it benign, I bet you want it stopped. I wonder what the holistic and alternative folks have to offer? (Not quack therapies, please! I mean your local town acupuncture place.) Just a thought...Cindy


When i had the EMG they were not in my eye that bad at all. Just these last couple of weeks has it been on my eye(under and above) so he didnt stick me with any needle in my face. He tested my right leg in a couple of locations, my right foot, right thigh, right arm, and back and they were all clean. He didnt check my left with the emg just the nerve study. I asked my doctor about the results and he said that it was clean and that one of my nerves in my leg /foot are supposed to be at least a 2 to be normal and mine was 9 so he said that was great, Sorry if what i just said about the nerve makes no sense at all, but i think thats what he said but i could really be mixing it up, i was just so happy to hear it was clean i may have blocked something out. He also said they didnt see anything on the emg but he could see the twiches by looking but the emg didnt pick any up although they are so frequent in the places he tested. My doctor saw them though so at least he knows i am not crazy. I wonder if he stuck the needle in far enough, because it didnt hurt at all when he did it and i thought that was weird. I mean why else would they not show up? Do they have to twich in that exact spot at the same time he puts the needle in for them to show up on the emg? I just dont understand that. And also when i had the nerve study done on my feet/legs the guy doing them said that my right leg nerve was not giving the same response as the same nerve in the left one, which sent me in tears and freaked me out. Then when it was done and i was waiting for the doctor to come in and do the emg, the doctor came in a did the nerve study agin his self and said it was fine and that it was just a " technical error" now i wonder because that one guy acted so sure and kept repeating it trying to get a response, and the the doctor just came in and did it one time and said it looked good.
Ashley
 

patricia1

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eyelids

I really dont think you have ALS . Many people maybe everyone has had a twitching in there eyelids. at some time Maybe you have eye strain. Have you been to a eye doctor.Pat
 

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Yes, from what I have read, eye twitches are benign.
 

boxer22

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patricia sciarrino said:
I really dont think you have ALS . Many people maybe everyone has had a twitching in there eyelids. at some time Maybe you have eye strain. Have you been to a eye doctor.Pat



Yeah, I know everyone has had twitching in their eyelids, i remember feeling eye twitches as far back as 10 that would come and go. But what i never had was twiching in about 95% of the rest of my body that does not go away. If it was just my eyes i would not be worried, but its not. The twitches in my eyes are just very annoying. And no I dont strain my eyes as far as i know. I am not saying that i am sure that i have ALS, god, I hope like hell i dont, but when your body starts twiching everywhere all the time when it never did before normally you just dont let it go, or at least i dont. Aren't you the one who had twitching everywhere for years and clean emg's and you still have ALS? :?
Ashley
 

boxer22

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vmd said:
Yes, from what I have read, eye twitches are benign.

Does that mean that people with ALS dont get fasciculations on their eyelids or under their eye from their nerves being damaged in that area? Does anyone know?
Ashley
 

ltr

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Ashley - yes, from the research I have read, als does not affect the eyes and the pals on here have confirmed that. As you have probably read, though, everyone is different and the research rules are broken all the time. I know the twitching is enough, but do you have any other symptoms with it? Any cramping, weakness, fatigue? When I was diagnosed with myopathy the neuro said that it could be caused from viruses, toxins, chemicals...they just don't know. Have you had a bad flu or anything different you can think of? One thing that everyone here can agree on is that stress will make your twitching much worse. I swear everyone agrees on that and we all agree on taking something for it while we are awaiting diagnosis. It will help you deal with what is happening with your body and it might even calm the twitching down. Did you say that the twitching bothers your sleep?
~Leslie
 

guwainengle

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I too have twitches under my eye and and on th eleft side of my face-- even sometimes on my top lip-- combine that with massive leg muscle twitches and arm twitches.. I think my stress over the twitches is causing them to twitch more-- Also the EMG and the MCV are all clean even when the doc see them in my leg and he says no ALS. It is a very tough thing to comprehend-- I just want an answer why the twitches are happening-- as I am sure you do too. But there is really no acceptable answer. Does anyon know if thee is a drug that can stop teh twitches-- I ahve taken neurontin/ flexeril/ xanax/ valium/ and wellbutrin-- nothing calms them down-- I am not taking anything anymore. The holistic approach is going to be my next step with high magnesium and vitamin B and potassium. Do you have any cramping?
G
 
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