Status
Not open for further replies.

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
OK, I gotta ask this. Does anybody else experience blurred and/or double vision?

My neuro symptoms started on March 16, 2006, with both slurred speech and blurred vision when I woke from an induced coma following open heart surgery.

The blurred vision has worsened at the same rate as my speech has, turning into double vision at a distance about the same time my swallowing problems started (about December, 2006).

Everything I have read says vision problems are not part of ALS, but there they are! Neuros have ruled out MG (no antibodies). My vision (blurring) worsens during the day without reason ... I'll drive to the store and see OK, on the way home, everything is much more blurred. It gets better, then worse. Only get double vision (not just two images side by side, but one higher than the other) in distance sight when I'm exhausted.

Big problem is double vision in reading. Looking at a magazine or newspaper, usually at night, but also in the morning now too, columns of type slide over each other. I have to keep forcefully pulling my eyes back in focus, and can only hold it in focus for a few seconds or so. My solution is to read with one eye closed. I've been thinking of getting an eye patch, as it's equally hard to keep one eye closed all the time.

I've finally gotten into a university clinic, and explained the eye problem, and the new doctor held her hand about 2 feet in front of my eyes and said, "any double vision?" I say, "No it doesn't happen at that distance," and the subject was dismissed. That's the same procedure as other neuros have done ... held their hand up a couple feet away, which is where I CAN see, and then changed the subject.

Went to the opomotrist (sp?) yesterday ... my fifth visit since this all started 2 years ago (have also seen an opthomologist sp?) for another pair of new glasses (my overall blurred distance vision has gotten much worse lately, after being stable for 6 months, except for the minute-by-minute fluctuations I described above), and HE said, "yes, this can happen with ALS." There are six muscles controlling the eyeballs, and they can weaken with ALS just as other muscles do. This is the first confirmation I have had that vision is affected by ALS.

BTW, there is nothing wrong with my eyes themselves to account for this.

Anybody else experienced this? The latest guy has written me new prescriptions for yet more new glasses, and I think the reading glasses will have prisms in them to hold my eyes in focus. Will see what happens.

(One neuro even told me that double vision was just part of aging. That's a new one on me.)

Anyway ... are these two separate problems that just happened to start on the same day, or could this be ALS related? And if the latter, will my sight eventually just go kaput completely?

Thanks for any feedback.
Beth
 
Last edited:

ZenArcher

Senior member
Joined
Feb 22, 2007
Messages
672
Reason
PALS
Diagnosis
02/2007
Country
US
State
PA
City
McEwensville
Possible yes but not normal.

Eye movements in amyotrophic lateral sclerosis.

Cohen B, Caroscio J.

It has generally been assumed that the oculomotor system is not involved in amyotrophic lateral sclerosis (ALS). However, reports from the literature and recent experience with patients indicate that there are oculomotor abnormalities in some ALS patients. These appear to fall into two main categories. One group of patients has signs that reflect damage or degeneration in cortico-oculomotor pathways. These patients have problems in generating voluntary saccades, convergence and pursuit eye movements. It should be possible to corroborate deficits in ocular pursuit in these patients with deficits in visual suppression of the vestibulo-ocular reflex (VOR) and in optokinetic nystagmus (OKN). A second group of patients, much less common than the first, has a more global type of ophthalmoplegia, probably reflecting a loss of neurons in and around the ocular motor nuclei. There are probably also patients with mixed types of involvement. Testing the vestibulo-ocular reflex (VOR) in conjunction with other tests of visual-oculomotor function should help in identifying the deficits. The relative incidence of the various types of deficits is not known and is a subject for study. It would also be of interest to correlate the changes that are present in the oculomotor system of patients with ALS with deficits in other parts of the somatic motor system.


Ocular abnormalities in amyotrophic lateral sclerosis.

Ohki M, Kanayama R, Nakamura T, Okuyama T, Kimura Y, Koike Y.

Department of Otolaryngology, Yamagata University School of Medicine, Japan.
It has long been known that the oculomotor system is not involved in amyotrophic lateral sclerosis (ALS). In early stages. Some authors suggest oculomotor abnormalities in some patients. In the present study, quantitative analysis of ocular movements including smooth pursuit eye movements, optokinetic nystagmus (OKN), visual suppression of vestibular nystagmus (VS), and horizontal saccades were investigated in 9 patients with ALS. These patients were neurologically diagnosed as having ALS in the early stage. The results were as follows: The velocity of saccade was markedly reduced in 4 patients. In addition, there were abnormalities of smooth pursuit (one patient), OKN (one patient) and visual suppression (2 patients). Furthermore, these abnormalities were observed more often in patients with bulbar signs. In conclusion, the results suggest a existence of ocular abnormalities in ALS, even at early stages.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Not wanting to add to the confusion but the Myasthenia Gravis information I was just reading says double vision, slurred speech and trouble swallowing are some of the first signs. I get a bit of blurrung lately but could be related to computer use.
AL
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
I have double vision but the words are double on top of each othe not side to side And reading lasses help that for me.

But Al is right MG has those symptoms and they get worse during the day and better after rest

Pat
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Thank you much for the feedback. I was convinced that it was MG for a long time because of the eye problem, but no antibodies showed up in two blood tests (AcHR and MuSK). And I've def. got tongue facics and atrophy (altho I just came across an article on Google reporting that at least one MG patient had both tongue fascics and atrophy ... arrrrggggg ... )

The neuro (#3 of 7) who diagnosed MG put me on Mestinon. First 2 1/2 days, I had instant recovery of speech and swallowing ... maybe back to 80% of normal! It was amazing and wonderful, but that stopped and I went back to my current state, and I never achieved that effect again with the Mestinon, despite fiddling with dosages with the doctor's urging. (Altho the Mestinon continued to give me huge boosts of strength ... lifting buckets of water, etc. ... and energy. But it interfered with my heart meds, so when they diagnosed ALS "for sure," I stopped the Mestinon and resumed the heart meds.)

It sounds like Jeff's sources are right ... it's possible but not common. Pat, you and I seem to have many of the same strange symptoms (sensitivity to odors, double vision, etc.)

Thanks, everyone. It helps to know that at least I probably don't have something else going on! This is enough to deal with right now!
Beth
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
My information also said the blood test can be wrong 50% of the time in the early stages.
AL
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
This gives hope to a lot of us un-diagnosed. I've been cleared for MG but that was back in '06. Maybe it was too early to pick it up! And I did have periods of double vision back then.
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
I dont think there is muscle wasting or atrophy with MG Pat
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
My information also said the blood test can be wrong 50% of the time in the early stages.
AL


Al, I've also heard that there are *very rare* cases of MG where no antibodies are ever identified by blood test ... apparently there are multiple antibodies that can produce the same damage.

And the fact that I had respiratory failure six months ago and then recovered good lung function led neuro #3 to suspect MG. Respiratory failure is a typical "Myasthenia Crisis."

But my tongue atrophy combined with tongue facics sure point to ALS. That, and the fact that the Mestinon did not affect my speech or swallowing after those two glorious days. (Although, what a boost of strength & energy it gave me. Unfortunately, the side effects were pretty bad ... my saliva was practically squirting out of my mouth, and I was twitching all over. They're both known side effects, and stopped as soon as I stopped the Mestinon.)

Maybe I've got them both! :)
Happy Canada Day!
Beth
 
Status
Not open for further replies.
Top