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Maggie Miller

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Joined
Oct 29, 2007
Messages
6
Reason
PALS
Diagnosis
11/2005
Country
MI
State
Michigan
City
East Lansing
I have been assured that ALS, which I was diagnosed with in 11/05, does not affect the eyes. However, I have noticed that I have a difficult time opening my eyelids from resting or sleeping, have blurred vision despite new glasses and can not longer cross my eye. I know, the latter seems pretty strange that I would want to do that, but I have always made people laugh and that was one of the things I would do when making funny faces. With bulbar onset my witty one liners are no longer, my silly faces impossible to make and crossing my eyes on the SOL list. What's up with this? Thanks Maggie
 

BethU

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PALS
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05/2008
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US
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California
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Los Angeles
I have been assured that ALS, which I was diagnosed with in 11/05, does not affect the eyes. However, I have noticed that I have a difficult time opening my eyelids from resting or sleeping, have blurred vision despite new glasses and can not longer cross my eye. What's up with this? Thanks Maggie

Hi, Maggie ... welcome to the "it doesn't happen with ALS, except when it does" club. Now there are two of us! (Actually, when my double vision kicks in, now there are four of us.)

I'm on my fourth set of new glasses in two years, have had steadily worsening blurred vision since the beginning of my symptoms, and continuing double vision at a close reading distance and sometimes in distance vision, too, if I'm really tired. Everyone (neuros, eye doctors, bus drivers, the guy who cuts the grass, etc.) assures me I can't possibly have vision problems because it doesn't happen with ALS.

Fortunately, my sight has stabilized for several months now, which is why I risked getting yet another new prescription for glasses a couple weeks ago, hoping that this one would last me at least a few months before becomming obsolete.

It seems logical to me that ALS could affect the muscles that control eye movements, but People Who Know These Things say it doesn't. But still ... here I am with ALS and double vision. Go figure.

Good luck! If you ever get a good explanation for this, please let me know.
BethU
 

awieleba

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Maggie,

I dont have diagnosed yet but its funny you pose this quesiton. I was just writing down my "issue's" for my next appt and since this all started 6-9 months ago, I have the eye lid thing. It is only on one side, my left wich is my weak side. It happens at night or in the morning~~when I go to open my eyes the left opens delayed after my right opens. It only happens when tired at night. I was hoping a mild form of gbs or palsy but I am not sure anymore. I did have a lot of twitching around that eye for awhile. (after I noted the lid thing) Just wanted to express my eye thing.

***hey, we are nieghbors! I lived in Okemas for short time a long time ago. What als clinic do you go to? I go to wayne state. Is U of M close for you. I live in rochester now. Take care...

april
 

CindyM

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I think it was Quadbliss who said it helps to put warm cloths on his eyes to help them open in the morning. I remember this advice since my own eyes are slow to open some mornings. I have to try a couple of times before they will allow me to see the light of day, lol. (Even then my friends will tell you sometimes I am slow to see the light!)
 

rose

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Mar 29, 2008
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7/2008
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Hi, Maggie ... welcome to the "it doesn't happen with ALS, except when it does" club.
BethU

Hi Maggie, although its true that most of the time the eyes are not affected, as you know, this isn't always the case (I already checked to make sure I could still cross my eyes after reading your post LOL) My neurologist at Hopkins feels that my eyes may not be closing tightly. She used the words "minimal" and "suspected". I tend to agree with her as I've been waking during the night with dry eyes. As I have "dry eye" anyway, I at first thought it was maybe getting worse, but it makes more sense that my eyes don't close completely when I'm in a relaxed sleep state, so they're drying more. There also have been times where there was a delay in my eyes opening like they should when I awoke, but I attributed it to dryness and that the lids were sticking to the eye. Who knows? You'll just have to type your witty one liners, and share some with us too! :)
 

olly

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2,732
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PALS
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11/2007
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uk
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uk
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uk
psp?

i would like to bring to your attention psp/progressive supranuclear palsy.
it has many symptoms of als but also effects the eyes.
the cells in the brain produce too much of a certain protien called tau,this causes neurons to die.
messages can nolonger be sent from the brain to certain muscle groups,especially those to the legs,speech,swallowing and vision.
part of the brain that controls mood and personality can be effected.
like als this can not be detected on a mri scan and a diagnosed is a clinical one.
with the eyes there would be a upward gaze,inability to blink and dry eyes,double vision.
due to not much know about it and only clinic symptoms to diagnosed it there are many people misdiagnosed as having parkinsons and other neuro illness.
sadly there is no treatment and survival rate is 5-8yrs from onset.
in britain 4,000 people are known to be living withit,but due to failiure to spot it and misdiagnosis it could be as high as 10,000.
if the eyes worsen get this checked out.
take good care.
caroline:)
 

Maggie Miller

New member
Joined
Oct 29, 2007
Messages
6
Reason
PALS
Diagnosis
11/2005
Country
MI
State
Michigan
City
East Lansing
the eyes "don't" have it?

april, I was a counselor at Okemos High School for 6 years until symptoms caused early retirement. what a great place! Thanks for your comments. I don't have double vision but could easily cross my eyes at will and no longer can, which, to me, means that my eye muscles are being affected. Same eyelid problem as you describe, plus when I take a shower the water actually makes my eyes hurt as if I have soap in them. Oh, also I am MUCH more sensitive to the sunlight no matter how dark or protective sunglasses I wear. I cannot read outside for more than a minute before things turn white. Pretty strange eye behavior in my book.[

QUOTE=awieleba;50868]Maggie,

I dont have diagnosed yet but its funny you pose this quesiton. I was just writing down my "issue's" for my next appt and since this all started 6-9 months ago, I have the eye lid thing. It is only on one side, my left wich is my weak side. It happens at night or in the morning~~when I go to open my eyes the left opens delayed after my right opens. It only happens when tired at night. I was hoping a mild form of gbs or palsy but I am not sure anymore. I did have a lot of twitching around that eye for awhile. (after I noted the lid thing) Just wanted to express my eye thing.

***hey, we are nieghbors! I lived in Okemas for short time a long time ago. What als clinic do you go to? I go to wayne state. Is U of M close for you. I live in rochester now. Take care...

april[/QUOTE]
 

Maggie Miller

New member
Joined
Oct 29, 2007
Messages
6
Reason
PALS
Diagnosis
11/2005
Country
MI
State
Michigan
City
East Lansing
thanks Caroline,

I will check on this with my University of Michigan doctors and team. Good call, although hoped that the end line would be , and one morning you awaken to snap out of it.............ALL. When I student taught 35 years ago I was coined an idealist...........guess it is still with me!
 

awieleba

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Just on a funny note or maybe not.

I got contacts in december and loved it. Then recently the the left contact (happens to be the weak side and the eye that sticks shut) started to get lost in my eye over the last month. It would float off and up in my eye, really gross! when I was with my girlfriend golfing it happen and she wears contacts, so I ask her if your eye muscle could shrink. She fell out of the cart lauphing at me, that this was soooo stupid and hypochondriac of me. She always rips on me about my eye muscle now (she has NO idea about this als scare). We were in the club house after and she was telling the story at my expense and then a lady who just had a baby the same time as me said the same exact thing with her contact was happening to her. Well, then at least I got a little credit that someone else had this strange thing. She thought hormones.

The thing is that I think my eye muscle has changed? But there are things that happen that may not be als related everytime something happens? Maybe it is hormones? but all the rest of my muscle's are shrinking so why not my eye. and it is the same eye that sticks.

will we ever know.......

april
 

claudiamedic

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Joined
Jun 27, 2007
Messages
8
Reason
PALS
Diagnosis
08/2005
Country
US
State
Indiana
City
Muncie
Bulbar Onset and vision Changes

I have bulbar onset and have had progressively worsening vision for about 1.5 years. It is driving me nuts! I use my computer all the time and it is becoming more and more of a challenge to both see and sit comfortably (my neck is weak and I have lots of neck/shoulder pain).

As for the eyes not popping open at the same time... definitely have that delay on my weaker side when I am tired (and so does another friend with ALS - not bulbar onset). I also sometimes don't have my eyes closed as tightly as I think I do and get soap in them. It has to be ALS muscle weakness.

The vision issues are much more of a problem for me as I am fast approaching the need for the computer to communicate and I have to see it to use it!:-?
 

Jennifer51

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Joined
Jul 7, 2008
Messages
441
Reason
PALS
Diagnosis
03/2008
Country
UK
State
England
City
London
I have bulbar onset and have had progressively worsening vision for about 1.5 years. It is driving me nuts! I use my computer all the time and it is becoming more and more of a challenge to both see and sit comfortably (my neck is weak and I have lots of neck/shoulder pain).

As for the eyes not popping open at the same time... definitely have that delay on my weaker side when I am tired (and so does another friend with ALS - not bulbar onset). I also sometimes don't have my eyes closed as tightly as I think I do and get soap in them. It has to be ALS muscle weakness.

The vision issues are much more of a problem for me as I am fast approaching the need for the computer to communicate and I have to see it to use it!:-?

One of the questions on my list for the neuro next visit was going to be about my eyes...left eye is weak anyway...although I had implanted contact lenses put in this year, just prior to my diagnosed...bulbar onset...sometimes my eye on the left, my weaker side takes a while to open up in the morning and I have also started to get problems with soap in my eye when I think it is closed....grrrr
 

rose

Extremely helpful member
Joined
Mar 29, 2008
Messages
2,879
Reason
DX MND
Diagnosis
7/2008
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US
State
Maryland
City
Anytown
One of the questions on my list for the neuro next visit was going to be about my eyes...left eye is weak anyway...although I had implanted contact lenses put in this year, just prior to my diagnosed...bulbar onset...sometimes my eye on the left, my weaker side takes a while to open up in the morning and I have also started to get problems with soap in my eye when I think it is closed....grrrr

Hi Jennifer, like I'd posted above, my neuro feels that my eyes may be having incomplete closure. It is a cranial nerve that controls this, even though that cranial nerve isn't usually affected by ALS. If you mention (or even if you don't mention it) during your exam, your doctor should be checking the various areas of your face for weakness. Good luck with your appointment! :)
 

claudiamedic

New member
Joined
Jun 27, 2007
Messages
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Reason
PALS
Diagnosis
08/2005
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US
State
Indiana
City
Muncie
What doctors don't know about ALS

I am continually dumfounded by the things that patients are experiencing that doctors say "doesn't happen with ALS" (PAIN, for instance). As for the cranial nerve not being affected... why would any nerve that innervates a voluntary muscle be unaffected? IMHO I think the ultimate cause of ALS will be found to be not in the muscle or the nerve, but in the neuromuscular junction. Again...I find it hard to rationally understand why some would be affected and not others. My physiology is not at the PhD level, but my educational and career background has left me with some understanding...

Let's keep on this and I, for one, am adding vision changes to my profile at PLM.

Thanks! :)

Claudia
 

BethU

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Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
I think the ultimate cause of ALS will be found to be not in the muscle or the nerve, but in the neuromuscular junction. Claudia

I know there is at least one research study underway about ALS and the neuromuscular junction. My hunch is that there are a lot of variants of ALS, and eventually, researchers will end up with several different causes, and treatments.

Agree on the neuromuscular junction connection!

BethU
 
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