Old 11-25-2011, 03:28 PM #1 (permalink)
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Default Eyelids not closing at night- is that a symptom of MND?

Hello, sorry to bother yall, I have posted a couple of questions this past week, as I am currently being evaluated/worked up for a smorgous board of issues, I have my university neuromuscular appointment on Jan 2nd, and just started seeing another neuromuscular specialist in the meantime.. I have kind of a strange history the past 8 months or so, hwoever I was curious about well lots of things, but one thing -
One of my first symptoms of this whole thing happening was waking up with dry gritty eyes, that were red- i assumed post partum hyperthyroid with my other symptoms going on, but it wasn't ... anyhow My eyelids don't close when I sleep now for months.. I have twitching in my face and tongue... and my right eyelid has been twitching after every single time I blink for almost 3 months now.. and it closes even less than the right one.. Is that even something that happens in ALS/MND? Do people get to a point where they have to tape their eyelids closed? All my serum MG tests have come back normal , and I dont have droopy eyelids, though they have seemed to change shape a bit- I attributed this to being up with a newborn and being tired, Anyhow I was just curious if eyelids are even affected like that.. Thanks again for any advice and your time in advance, I greatly appreciate it
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Old 11-25-2011, 04:04 PM #2 (permalink)
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Default Re: Eyelids not closing at night- is that a symptom of MND?

Have you been checked for Bell's Palsy? Regardless of the cause, you should be using an eye ointment for extremely dry eyes when you sleep, to help protect the cornea.

I have very dry eyes, and use Systane ointment. It is over the counter, and the label will read 'Overnight Relief'. Made by Alcon. Green tube with a little bit of blue and white on it.

I have not read your other posts, but will go do so now.


***

Okay, I read your other posts. I am sorry you're going through all of this with little ones at home. It exhausts me just reading it.

No, it does not sound like anything I've experienced, or others on there with MND have had happen. Like your doctors may have said, and Wright suggested, a post viral infection could be affecting your nervous system.

Be encouraged that once the cause is discovered, it should be treatable, or it may even just stop on its own.

In my opinion, you do yourself no service by examining your tongue, and other such actions. No one really knows what their tongue looks like anyway. Once they start scrutinizing it, is when anxiety has a chance to make its grand entrance.

One statement you said struck me as odd, and it, more than anything else made me wonder if your fears (very understandable considering what you've been going though) could be causing some of your latest problems.

You said you had problems swallowing unless you tilted your head forward. That is exactly backwards. People who have difficulty swallowing, and are instructed to tip forward when swallowing, because it closes off the airway more, and helps protect against aspiration. It is not at all easier.

Try your best to focus on something other than what is wrong. Let them run their tests, and figure it out.

It has to be scary, and frustrating. But, if it were something like a stroke that happened, you would not keep having more symptoms, so that's a good thing. It truly sounds nothing at all like any MND,

A friend of my son's had a similar problem, but with rapid heartbeat thrown in for good measure. She is about your age, and has four kids. She spent over 6 weeks in the hospital, four of those weeks at Johns Hopkins. The doctors never did find the cause, but she eventually recovered completely.

Good luck to you, I hope you get answers soon. My heart goes out to you. Please let us know how you get on.

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Old 11-25-2011, 04:14 PM #3 (permalink)
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Default Re: Eyelids not closing at night- is that a symptom of MND?

Thanks so much for your response , I really appreciate your time! No, i haven't been checked for Bells, or I guess none of the neuros/docs think thats a possibility..its on both sides- plus a slew of other symptoms unfortunately. It is worse on the right side which is the eyelid that twitches, and when I wake up every morning that eye especially is red, dry and mad- so your right, no matter the cause I should probably be protecting my eyes with drops/ointment of some sort! Thanks for taking a look at my other posts too- I'm apparently a medical mystery now, they are ruling things out slowly.. which the more they rule out the less that is left on the table, one of which is ALS... so i'm getting increasingly worried about that as a possible diagnosis. I really appreciate it!
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Old 11-25-2011, 04:28 PM #4 (permalink)
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Default Re: Eyelids not closing at night- is that a symptom of MND?

I wrote more (added to previous post)
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Old 11-25-2011, 04:40 PM #5 (permalink)
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Default Re: Eyelids not closing at night- is that a symptom of MND?

I can't recall anyone with ALS saying their eyes won't close so I'd have to say it's not ALS related.

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Old 11-25-2011, 04:48 PM #6 (permalink)
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Default Re: Eyelids not closing at night- is that a symptom of MND?

Thank yall so very much for your replies... I REALLY appreciate them! It makes me feel better hearing that for sure... Rose- I must have written that wrong as far as the swallowing goes- I have to tilt my chin down or forward to make swallowing easier - I noticed this when I was doing my bowel prep (yuck) for my GI issues - I just thought huh, I used to be able to chug water looking up.. but again thought I'm just tired! Since then, it's just gotten worse.... Thats really interesting about your friend-- I don't know if i wrote in my previous posts, but I actually have been having a fast heart rate which adds to the mystery! It was between 130-140 for almost a month when the GI stuff started happening.. and it's always been below 70 my entire life.. They admitted me into the hospital due to the heart rate and malnutrition from the GI stuff the same week the neuro part of it all started... Now the heart rate seems to be going down low - once in the 40's which made me feel a little lightheaded, but its generally around 60 again.. Whatever the cause I'm glad to hear your friend's got better! My right thumb I now can barely bend- this just started this week.. ugh.. Did your friend have neuro symptoms too? I haven't looked in the mirror at my tongue for two days, as I know it adds to the craziness that is my mind right now!
Again, thank yall so very much for taking the time to respond.. I really appreciate it!
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Old 11-25-2011, 08:08 PM #7 (permalink)
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Default Re: Eyelids not closing at night- is that a symptom of MND?

ok, I saw your post and your other one's. I am not a dr, nor pretend to diagnose someone's issues. But I will tell you this, at the same time my disease started, my sister started having nuerological problems. One of her symptoms was her eyes, it has taken over a year for them to discover her problem. Just a month or so they discovered that she has an unknown anti-body causing her problems and they are now trying to find a treatment. I am not saying this is your problem but I am saying to be patient and eventually they'll discover what's going on. Hopefully they will discover it and it will be treatable. I pray for the best for you.
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Old 11-25-2011, 09:47 PM #8 (permalink)
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Default Re: Eyelids not closing at night- is that a symptom of MND?

Thank yall so much for taking the time to respond, it really means a lot to me, diagnostic limbo with such serious possiblities on the table, of course is no fun. Rose- I must have been tired when I wrote that one post about the swallowing- I meant I did have to look down to swallow.. i first noticed it a few months ago when drinking a GI prep (yuck) for the GI issues.. I thought to myself, huh, I used to be able to "chug" with my head back and up.. I just thought it was maybe due to that stuff being thick, even though it was as clear and almost as thin as water. I am getting pretty worried since I now can't bend my right thumb much at all (new this week) and have some mild thenar wasting, and my right calf/lower leg (which is the twitchier one, and the one I feel like I do have sensation abnormalities in) is now smaller than my left, which it wasn't two months ago... You are so right about the overanalyzing my tongue etc, I swore I wouldn't look and analyze my tongue for two days (shoulddn't be such a big goal I know) So, did your son's friend have neuro symptoms along with GI symptoms too? Funny you mention the heart rate- when this all started - the GI stuff, my heart was RACING in the 130s-140s for over 3 or 4 weeks, I kept writing it off as stress maybe, or malnutrition from the GI stuff.. I ended up getting admitted into the hospital due to that and my GI issues.. It has ran over 100 for about 3 months (I've always been down in the 60's). That makes me feel much better that it stopped progressing/resolved on its own! gives me some hope!
Thank you Al- I hope none of it is ALS related of course, but for each aspect of this whole thing that is likely not to be makes me feel better! thanks so much for your time!
TNTtony- that's interesting.. do you happen to know what antibody- or was it even one that showed up in a test? All my life all my titers to viruses/vaccines have always come up negative, and during school and my job I had to get re-vaccinated multiple times since I would never mount a titer to anything, like chicken pox, even though I had chicken pox as a kid and had the vaccine a few times! I wonder if there could be a relation.. They have checked a lot of antibodies on me so far- MG, sjogrens, ana, etc etc.. pending still is lamber eaton and some GM-1 .. I'm afraid none of them will be positive since basically none of my antibody tests ever have been.. I'm hoping for a positive so that we can blame this on something else, especially before our appointment at the neuromuscular/ALS clinic in January.
Thank yall so very much for your time.. do yall happen to know if this were ALS, if it could progress that fast? aka- my knee be affected one week, both hands at the same time the next and then my mouth a month or so later? seems too fast.. now my symptoms are progressing asymmetrically more than when they started.. Thanks again, I appreciate all of yalls help!
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Old 11-25-2011, 11:02 PM #9 (permalink)
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Default Re: Eyelids not closing at night- is that a symptom of MND?

The anti-body will be named after my sister and a report written, once they figure out how to treat it. How they figured it out I do not know. It took them a long time. My sister went downhill faster than I have and her cognitive abilities went very quickly she got so bad she couldn't even remember her own name. I do believe it was her eyes that were affected first.
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Old 11-25-2011, 11:43 PM #10 (permalink)
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Default Re: Eyelids not closing at night- is that a symptom of MND?

Yes, my son's friend had neurological and GI symptoms as well. I wish I could remember more of the specifics. It has been almost exactly a year since this happened, and she is truly fine now. She presented with extreme nausea— that is what originally landed her into the hospital, and then she just kept getting worse while there. She was first admitted to a very good regional hospital, where she actually works as a nurse, but after 10 days or so, they transferred her to Johns Hopkins. Her doctors at Hopkins were baffled. For a while they thought she maybe had paraneoplastic syndrome caused by a cancer somewhere in her body, but they could not locate it. I believe the closest she ever got to a diagnosis was that she had post viral autonomic neuropathy. I remember they did a tilt table test, in connection to that theory.

And yes, she is really 100% okay now.

Seriously, get some gel ointment for your eyes, so much damage can happen to the corneas if they are constantly dry. I keep a tube (and a back-up tube) on the nightstand by my bed, putting a little glob inside the lower lid of each eye is the last thing I do before I turn out the light.

Please try not to worry, I know how hard it is when our children are babies, our instinct to protect them and to be there for them is so strong.

Tony,
What your sister (and your family!) has endured is something else. I hope they are able to develop an effective treatment for her.

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Old 11-26-2011, 12:00 PM #11 (permalink)
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Default Re: Eyelids not closing at night- is that a symptom of MND?

TNTtony- wow, sounds like yall have been through a lot... Yall are in my prayers, I hope they can find a cure, for not only you, but your sister too! Thanks again for your time and responding, I really appreciate it!

Rose- so glad to hear that she is ok- they have tested me for paraneoplastic syndromes (at least tested my blood for them anyways), all negative. Lambert eaton is the only one still pending I think.. I think I'd be able to be less stressed out about it all if it were only in my limbs.. but now with the tongue, speech and swallowing, I have less hope that it's a neuropathy, I have read of a few cases that had tongue atrophy/fasiculations /bulbar symptoms, but it definetly seems not to be likely.. and with lambert eaton being REALLY rare it makes me worry that will come back negative too .. I'll get some eye lube, I agree, I have told my husband many times the last few months that I might be able to be less stressed out, more accepting of the possible diagnosis if it wasn't for the kids- it defintely makes it much harder for me thinking about everythign that comes along with that (2 kids under 2 years old), and after going through years of fertility treatments, miscarriages and complicated pregnancies to get my miracle kids into this world! I might see if my new neuro- who is a neuromuscular specialist can repeat my EMG before christmas and before my jan 2nd university appointment so that I can at least have a better idea of what may be going on. Thanks again so much for your time, I greatly appreciate you taking the time to respond. It really helps "talking" to someone about all of this!
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Old 11-26-2011, 12:18 PM #12 (permalink)
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Default Re: Eyelids not closing at night- is that a symptom of MND?

So sorry for what you are going through. Nothing worse than not knowing. Praying for a quick and treatable diagnosis! Keep the faith.
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Old 11-26-2011, 11:18 PM #13 (permalink)
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Default Re: Eyelids not closing at night- is that a symptom of MND?

Ladyrider- thank you so very much, I really appreciate you taking the time to read my post and to reply, it really means a lot to me. Not knowing is defintely not fun since of course I think most people, including myself, fear the worst, though I'm sure knowing it isn't exactly a walk in the park either.. I'm praying for you as well! Thanks again, I really appreciate it
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Old 11-27-2011, 12:52 PM #14 (permalink)
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Default Re: Eyelids not closing at night- is that a symptom of MND?

Answer to the question you posted in this thread: NO!
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Old 11-27-2011, 01:13 PM #15 (permalink)
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Default Re: Eyelids not closing at night- is that a symptom of MND?

How in the world would you know what your eyelids do when you're sleeping? Month of eyelids not closing would have caused major eye damage (if it were even possible, and I don't think it is)
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