Eyes

[boxer22]

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]

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]

I thought droopy eyelid is myastia gravis Pat

[ltr]

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]

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:

[CindyM]

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]

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]

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]

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]

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

[vmd]

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

[boxer22]

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]

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]

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]

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

[ltr]

G - Many months ago, when I was having a hard time buttoning, yet the docs weren't finding anything, Jamie sent me a high dose regimen that really took my twitching down. It didn't stop them, but they were a lot less. My neuro agreed with the regimen when I told her about it and said that yes it does help. I think Baclofen helps some people also, but I would start with the vit. regimen first. Maybe you can search on the link above for the regimen or I can look it up for you. In the afternoon, when I feel the worst, I use sublingual B complex. Hope this helps. ~Leslie

[patricia1]

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
Atually I never had any twitches until two years ago No weakness either all that came after 6 years of slurred speech Now I have twitching but nothing like you have .I know once I did start with twitches I got muscle weakness and atrophy I think if you have all that twitching with no weakness and atrophy its probably not ALS. Even my cpk is low emgs are still neg as of six months ago MRI neg so go figure Thats why I came to the forum last year not 8 years ago. I am happy I did wait. It made me not worry and i went on with my life. Its only now with no use of my arms did I start to come to this forum. I get great support here,knowing I am not alone with this horrible disease Pat

[ltr]

Pat - that's a very different story from the usual, isn't it?? I thought no als clinic would ever say a person definitely had als without a positive EMG or muscle biopsy. What happened to the criteria that has to be filled in order to give a diagnosis like that. There is no way they can be sure it isn't something else, there are so many other diseases it could be with a clean EMG. Inclusion Body Myositis causes als symptoms, but with a slower progression like yours. So does polymyositis and MG, and sometimes bloodwork won't show it. I'd definitely be insisting on a muscle biopsy with clean EMG's. We have all read many, many docs that have been wrong on this forum before and they just don't really have anything to base your dx on except your symptoms which are like many of ours on this site, mostly undiagnosed members. I hope you pursue it, because maybe if you had been treated years ago you wouldn't have progressed this far. Good luck~Leslie

Ashley - didn't mean to get side tracked off your post!! Try some of the suggestions posted and let us know how you are doing. Try not to worry, remember anxiety and stress make it much worse. We all care on here, so keep us posted!! ~Leslie

[patricia1]

Leslie I have asked for a muscle biopsy but my md said I show no signs its anything else but als.You have to understand that slurred speech is almost always ALS Pat

[boxer22]

Leslie I have asked for a muscle biopsy but my md said I show no signs its anything else but als.You have to understand that slurred speech is almost always ALS Pat

Did any doctor ever diagnose you? I also like leslie thought you had to have a bad emg in 3 different areas for them to tell you that you have ALS? If you had slurred speech from als wouldnt it have progressed a lot more in 8 years, because wouldn't that be bulbar onset? I have heard thats the worst and fastest type.

[boxer22]

Ashley - didn't mean to get side tracked off your post!! Try some of the suggestions posted and let us know how you are doing. Try not to worry, remember anxiety and stress make it much worse. We all care on here, so keep us posted!! ~Leslie[/QUOTE]


Thanks leslie, , do you happen to know what that mix of things were that helped your twitching? I would love to try it. My doctor gave me Clonazepam and it does nothing for them! I am also on welburtrin but of course that doesnt help the twitches either.

[patricia1]

Did any doctor ever diagnose you? I also like leslie thought you had to have a bad emg in 3 different areas for them to tell you that you have ALS? If you had slurred speech from als wouldnt it have progressed a lot more in 8 years, because wouldn't that be bulbar onset? I have heard thats the worst and fastest type.
They never called it bulbar onset. First they called it MG then Bulbar palsy then MND then I went to John Hopkins saw Dr Rothstein Who is the ALS researcher and he said I had ALS in about 5mins after examining me .Now I go to Philly every three month to a ALS clinic. And I have to think they know what I have. I would think Pat

[patricia1]

I take Vit B1 B6 B12 shots Strovite advance which is a script and CoQ 10 Maybe thats why I am still here. I been on strovite advance for 7years Hope that helps Pat

[ltr]

Here's the regimen. I don't take all that vitamin E, I take 800, but you will find what works for you. Also, low vitamin D and calcium have been shown to cause achiness and muscle problems, so I added them at the request of my rheumatologist. Get a good B complex and then in the afternoon, when I feel real bad, I take a sublingual dose of B complex with an added B12. Check with your doc, but I'm sure they're safe. All my docs are aware of this regimen. I pray this works for you and whatever is happening to you passes. ~Leslie


Thanks Jamie, we keep passing this around!


Vitamin C - 3000 mg per day
Vitamin E - 2000 IU per day
Vitamin B 12 - 3000 mg per day (sublingual)
Co CQ 10 - 300 mg per day
Beta Carotine - two per day (50000 IU)
B complex


Split taking them up into at least 3 doses...i divided them all into two or three doses.

[boxer22]

[QUOTE=ltr]Here's the regimen. I don't take all that vitamin E, I take 800, but you will find what works for you. Also, low vitamin D and calcium have been shown to cause achiness and muscle problems, so I added them at the request of my rheumatologist. Get a good B complex and then in the afternoon, when I feel real bad, I take a sublingual dose of B complex with an added B12. Check with your doc, but I'm sure they're safe. All my docs are aware of this regimen. I pray this works for you and whatever is happening to you passes. ~Leslie


Thanks Jamie, we keep passing this around!


Vitamin C - 3000 mg per day
Vitamin E - 2000 IU per day
Vitamin B 12 - 3000 mg per day (sublingual)
Co CQ 10 - 300 mg per day
Beta Carotine - two per day (50000 IU)
B complex

Wow that seems like really high doses, but i will give it a try, I already take vitamin c and b 12 but will add the rest. Thank you guys!

[boxer22]

They never called it bulbar onset. First they called it MG then Bulbar palsy then MND then I went to John Hopkins saw Dr Rothstein Who is the ALS researcher and he said I had ALS in about 5mins after examining me .Now I go to Philly every three month to a ALS clinic. And I have to think they know what I have. I would think Pat

Are all of your muscles affected now? Can you use your arms/legs at all? Is your breathing still ok? It seems like you went to all the right places, its just crazy that you still have clean emgs, but i guess thats better then having bad ones.

[patricia1]

Yes I still breathing fine still walking I do fatigue I drive I chew and swallow with minimin problem can still ly flat on my back without breathing problem So I guess that wont last I am do for a emg but whats that going to provepat

[boxer22]

Yes I still breathing fine still walking I do fatigue I drive I chew and swallow with minimin problem can still ly flat on my back without breathing problem So I guess that wont last I am do for a emg but whats that going to provepat

Its really great that you can still do all of that! I heard their are a few cases where ALS has been known to just stop progressing. I really wish that they could found a cure and what causes it.

Ashley

[Kewanee]

You may want to google Dystonia. There are many and can start with symptoms like twitches of the eye lids and muscles.

Kewanee