Vision

I left the hospital on 1/11/2010 post GBS and my vision was effected in the left eye. Blurred an d double. It has yet to get any better . Still hoping it will improve as my recovery improves. Thinking about getting glasses to compensate.

Hi Lisa

I had vision issues during the acute/recovery phase. It’s much better now.

However, I have lost the ability to read small print. Before GBS, I thought that my vision was perfect. My eye doc just said that it is a part of getting older and gave me a mild scrip for reading, working on the computer, etc.

Hi Lisa…eye info. There are six muscles in each eye. Names are superior rectus, inferior rectus, lateral rectus, medial rectus, superior oblique, interior oblique. In addition, there are two muscle groups in each pupil. Names are dilator pupillae and sphincter pupillae. All are controlled by the peripheral nervous system and may be effected by GBS. End result…blurred vision, if there is a weakness in any of them. My eye doctor could pick up on this. He is an MD. My vision is still improving after almost 4 years. These muscles are very sensitive. PS. my vision has improved much more than other areas, over time. One day you will notice you are seeing clearly again. However, fatigue, illness, allergies can bring back blurred vision. Muscles are changed forever, I’m guessing.

I do not have an answer for a cure or a reason for the symptom, but what I have discovered is that when I focus, the print is clear, when I move just my eyes the edges of the line blur and I have a hard time finding the next line. If I move my head not just my eyes everything stays in focus. Go figure; you got to love this illness.

For the first 1 1/2 yrs of GBS, I was dizzy all the time, my vision was swirling around and I could hardly read a thing without getting words mixed up and words changing position from top to bottom and side to side. My vision was also dim and blurry, it was a lot harder to actually see without straining to see.
The headaches & the dizziness gradually cleared up after 2 years, though I still get them if something else affects me. Vision very gradually improved; had to relearn to focus, like a stroke patient. Had to relearn how to read from side to side and watch only the word I was reading, then look at the next word to the right, read it, and so on… That was very hard and scary, and often I was discouraged, wondering if I’d ever get any better. I still make many mistakes in eye-hand co-ordination, but I’ve improved. I also find I have to wear sunglasses all the time outdoors and inside if there are UV lights, or my vision gets dimmer and dimmer after a few minutes exposure to UV lighting.

It was wonderful this year to finally come to the place where I could hear again without distortion and pain, and nerve stress. I can listen to the radio again, and have been catching up on the songs and programs I love.
I could not read my Bible for the first few years of GBS; the letters swirled around, and I couldn’t make sense of them, couldn’t remember what I had just read and couldn’t focus on the print; but lately I’ve been able to read my Bible again with reading glasses, just a few minutes at a time, but able to focus again, read with understanding and remember for a few moments what I just read.
I can read some music again, but my eyes play tricks on me too.
I can do some basic sewing again, but no crochet or knitting.

This short-term memory loss is still a problem for me, but not as bad as before when I’d forget to turn the stove off and forget if I locked the door, so I’d walk blocks back to the house to check the lock.
It’s improving now, and I think it’s a matter of time for us, as the slow healing takes place.

Lisa:

I am sorry to hear about your vision problems. I had some serious vision problems and still do after GBS. As LUV2SAIL has said, the muscles which aim and focus the eyes are probably the culprits in your blurry vision. As things improve, the nerves operating those muscles will eventually re-myelinate and you should see some improvement, but they may re-myelinate imperfectly causing some residual problems.

I used to work in photogrammetry and part of my job was to align stereoscopic images to create 3-D maps. Eight years after GBS I couldn’t correctly line up stereoscopic images without the aid of blind luck. Some parts of my life are going to be gone forever after GBS but hopefully you will get most of your life back.

[QUOTE=D.U.]For the first 1 1/2 yrs of GBS, I was dizzy all the time, my vision was swirling around and I could hardly read a thing without getting words mixed up and words changing position from top to bottom and side to side. My vision was also dim and blurry, it was a lot harder to actually see without straining to see.
The headaches & the dizziness gradually cleared up after 2 years, though I still get them if something else affects me. Vision very gradually improved; had to relearn to focus, like a stroke patient. Had to relearn how to read from side to side and watch only the word I was reading, then look at the next word to the right, read it, and so on… That was very hard and scary, and often I was discouraged, wondering if I’d ever get any better. I still make many mistakes in eye-hand co-ordination, but I’ve improved. I also find I have to wear sunglasses all the time outdoors and inside if there are UV lights, or my vision gets dimmer and dimmer after a few minutes exposure to UV lighting.

It was wonderful this year to finally come to the place where I could hear again without distortion and pain, and nerve stress. I can listen to the radio again, and have been catching up on the songs and programs I love.
I could not read my Bible for the first few years of GBS; the letters swirled around, and I couldn’t make sense of them, couldn’t remember what I had just read and couldn’t focus on the print; but lately I’ve been able to read my Bible again with reading glasses, just a few minutes at a time, but able to focus again, read with understanding and remember for a few moments what I just read.
I can read some music again, but my eyes play tricks on me too.
I can do some basic sewing again, but no crochet or knitting.

This short-term memory loss is still a problem for me, but not as bad as before when I’d forget to turn the stove off and forget if I locked the door, so I’d walk blocks back to the house to check the lock.
It’s improving now, and I think it’s a matter of time for us, as the slow healing takes place.[/QUOTE]
Thank you for your comments.
I was diagnosed w/ CIDP in late February,2011. IVIG infusions began in early March. I seem to have some vision change (will confirm or not after my eye doc appt. in June). I seem to have some memory issues. I was wondering if this was common or possible. I’m glad to read that your bible reading ability is coming back. God is great and He gets me through the tough times. And after reading this forum, with all that others have to struggle through, I realize how good I really have it. God bless you all! Be strong and positive.

Hi,

I used to be on the Forums a long while ago and was wondering how everyone was doing so came for a catch-up. I saw these posts about eyesight and wondered if my experience might hep.

Following GBS in 1993 I was unaware of any new eyesight issues. However, when I next got my eyes checked (not long after leaving hospital) I was told that I had prism issues and was given new glasses – I later discovered (when I changed optician’s)that the prism correction was the wrong way round. A year before contracting GBS I wore contact lenses. Aafter GBS I was told that I could not use them – because of said prism issues.

Things have gotten foggy (please pardon the pun). I have Best’s disease – a heridatory eye conditon – that now has me visually impiared. Whilst I now think that something was going on just shortly prior to the GBS (related to the Best’s disease, not the prism), the prism problem only showed itself after the GBS. My twin also has Best’s disease but, thankfullly, it has not caused a major deterioration in her eyesight.

I personally think that the GBS has been detrimental to my vision. Following GBS I had double vision issues twice. I strongly suspect GBS caused the prism problems and I think it had a hand in my vision deterioration. On the plus side, for others, I was born with Best’s diisease and think tha GBS simply exacerbated, or kick-started, it.

Personally, I think it would be a good idea to have regular eye checks, because of, amongst other things, macular degeneration – I understand that it is a common cause of eyesight deterioration.

I started writing this as a “I think GBS can affect your eyesight but I wouldn’t worry too much” psot. I’m sorry it hasn’t cme out like that but I did have an underllying condition just waiting to be kick-started.

As to the short-term memory loss that was mentioned – I so relate to that. I particularly recall that “short-term” meant anything between 1 minote and 24 hours. It was scary at the time and I started writing myself notes (that I quite often forgot to read). When I used to be on the Forum regularly it was known as bnain freeze. It definitely got better. I started to do puzzles and remember it was a bit scary at first – it felt like rust falling off my brain.

God bless

Teresa

PS I apologise for any typing errors. I may have an excuse bt it still makes me annoyed.

Hey Teresa Anne:

So glad to hear from you again. How is your daughter doing? It was a real pleasant surprise to hear from one of the old-timers.

Lee

Hi,

this thread was the main reason for me to register on the forum (and finally to also get activated account). So, hi everybody from across the pond!

Having been hit by GBS + MFS in summer last year I was in intensive rehabilitation up to christmas (wheelchair etc., no ventilation) and am now mostly back to normal if you consider my physical abilities. During the worst period, I had a severy paralysis of my arms, legs, facialmuscles, tongue (partly) and lost control over the eye lids and had double vision.

As of now, I am still having trouble standing stationary for an extended period of time and keeping my balance with closed eyes (like thread #7309). Also, reading / computer for an extended period of time leads to blurred vision on (at least) one eye which lasts for a variable time from minutes to days. Some tunnel vision might occur. Here, the eye doctor says everything is ok. The neurologist says the same. And both wonder why I am having these issues and suggest that there might be some psychological reasons. So, I am quite happy to see that there are others who have experienced / experience the same. Thanks for your reports.

Finally… well… but let me ask you a question I am quite troubled with: How do you cope with work if you have these spells of dizzy or blurred vission? Personally, my vision goes bang after a couple of hours staring into a computer. But this is mandatory in my profession. Therefore, while I am back to some kind of work, I really can’t see me working full time any time soon. And being the primary “moneymaker” for my family, this can be troubling…

Greetings, clueless

Hi Lee – thanks for remembering me; I so like the term ‘senior member’ as it sounds much better than ‘old “”””‘.

It’s taken me 5 days just to get back on again – password issues (memory!), amoangst others.

I was just wondering if my recent experience might be of use to Clueless. A chap from the National Council for the Blind in Ireland (it helps those with differing vision problems) came round this week and tweeked my computer. I doubt it would help with dizzy spells but might help with blurred vision. I am presently typing in white on a black background with the computer tweeked for the screen resolsution, amongst other things. Whilst on the internet (typing here, for example) the actual screen-shot size is at about 150 per cent.

The other thing I notice, Cllueless, is that you said your vision goes ‘bang’ after a couple of hours. My teacher-mode is coming in here – you oughtn’t to be staring at a computer screen for two hours. I suggest that anyone using a computer needs a break away from it each hour.

My personal opinion is that whilst eye doctors and neurologists may tell you that your vision is okay, they are not looking through your eyes. I have a lot of respect for these professionals and I have been told that I do not really need strong prescription glasses anymore. On the one hand that suggests that my eyesight is pretty good. However they also tell me that I am visually impaired. So, I don’t need them because they would be of little use! You have to read between the lines (oh I wish I still could!). In my case, what peripheral vision I have is not so bad, but my central vision is on he way out – so whilst I may not require strong glasses, I could not see your face if you walked towards me anyway. What I’m getting at is – don’t distrust yourself because of what others tell you.

I could be completely wrong – you had GBS only recently (last year?). Surely, if nerves are damaged and those that can recover take time, then that would presumably apply to the optic nerves etc as well. If after a couple of hours your eyesight goes ‘wallop’ is it not simply exhausted? If so, surely regular breaks away from the computer would be a good thing? One other thing I learned, before GBS, was to take your eyes off the computer at regular intervals and look into the distance for a while, to give your eye muscles a rest. After all, if you kept your arm muscles strained for 2 hours you would certainly feel the effects.

I hope this makes sense.

God blwaa
Teresa

Hi Teressa,

yes, I had GBS beginning summer last year (2010). And you are more or less getting it correctly Normally, my vision is quite good. A couple of days ago I even went back into “my shed” and did some soldering on microelectronics with distances less than a milimeter. No problem This really made me happy. So, if my eyes work correctly, I am back to normal.

[QUOTE=Teresa Anne]
My teacher-mode is coming in here – you oughtn’t to be staring at a computer screen for two hours. I suggest that anyone using a computer needs a break away from it each hour.
[/quote]

Well, your “teacher mode” is ok with me. And – wherever possible – I try to observe this. Take short breaks, rest your eyes by looking out of the window or at least in the distance. So, may be I should have written something like “without taking major breaks which are longer than a couple of minutes”.

In generall, under artifical light in a big office far away from the windows and with air conditioning, my situation gets worse. Unfortunately, these are the conditions I have to work in. And taking regular breaks longer than a couple of minutes is just not an option once I should go back to normal work. My employer would not tolerate this. Also, there are periods of time where I have to closely monitor the computer screens for a longer period hence putting quite some strain on my eye sight even before GBS.

[quote]
I could be completely wrong – you had GBS only recently (last year?). Surely, if nerves are damaged and those that can recover take time, then that would presumably apply to the optic nerves etc as well. If after a couple of hours your eyesight goes ‘wallop’ is it not simply exhausted?
[/quote]

Yes, I think so, too. As health care starts increasing pressure towards a full reintegration into the general workforce, I have to somehow consider working with this condition. Hence, my question in my initial post how other people cope with such a situation and get on with their work / life / whatever… And getting on with it, we all must. But learning from each other can always help.

have a nice weekend, clueless.

Hi again

You mentined ‘how do other people cope’. Firstly, I don’t know cos I only know my experieicne. However, (there was always going to be a ‘but’ or an ‘however’!) I have often read of people going back to work too soon, trying to deal with long-term problems in the short-term and, on the whole. they have learned the hard way; I think we all do.

I don’t have practical experience to offer as I wasn’t working outside the home when I got GBS. But, if you can come up with something that would help you, and present it to your employer as a general good idea from their viewpoint, all to the good.

I had visual problems at work, years after GBS, and my boss almost jumped at the chance to assist what he saw as a problem waiting to be solved. I was offered a computer programmae that I didn’t actually need at the time. Firstly, he was a nice guy and secondly, it could have made my employers look good cos they were (at no cost to themselves) helping someone.

Is there an organisation that you can contact for help regarding eyesight issues? I was surprised at how tweeking my computer has helped – it’s not just about making the print larger; it’s also to do with the resolution, the colours etc.

God bless

Teresa

I got my GBS nov. 2006 and got very bad double vision, It got better but last time I check with my eyedoc he told me if this dont get better I might undergo some surgery to fix some nerves that dont do as my head tell them to do. I cross my finger that I dont need it, I have to be very good in keeping me not over doing things then my eyesight is in better shape.
xoxooxxo
Helga from Iceland

Dear Helga

I hope you don’t have to undergo surgery and that you are becoming very good at not over doing things.

I know how hard that can be but I think you have to decide whether you want to do whatever it is you are keen to do OR you want to help our eyesight.

To put it another way, is what you want to do worth risking your eyesight for?

I burned my foot a few years ago and was told that I could have a skin graph (6 weeks on my back in hospial) or it might be okay if I rested my leg for 3 weeks. I was scared of the idea of weeks on my back because I had already had GBS and I am a smoker. I was so very good and rested my leg and it healed beautifully. At the time I felt a bit of a fraud but the fear of having a skin graft kept me going.

Only you can make the choice. Is what you want to do now worth risking your eye sight for?

I had GBS and also have an underlying eye condition known as Best’s disease that I think GBS kick-started into action. With hindsight, had I been told that taking it easy for a number of months would avoid my current eyesight situatojn I would have grabbed it. It woudln’t have worked for me – different scenario but it there’s a chance that it could work for you, I would grab it.

God bless
Teresa

Well, Theresa,

I am quite competent to install / setup / administer my computer to help ease the stress put on the eyes by such kind of computer works. But this might be something I have to continue further. Also, some automatic tool which shuts down the computer every X minutes for a (short) period of time might be quite helpful as a visual reminder to rest the eyes. This is something I used quite successfully some years ago while having trouble with one of my wrists.

Thinking it over, there might also be some options to move away from a computer screen for certain tasks and use paper-based approaches, albeit at a slight drop in efficiency.

[QUOTE=Teresa Anne]Hi again
I had visual problems at work, years after GBS, and my boss almost jumped at the chance to assist … [/QUOTE]

And this is something I doubt I can expect. At least, e.g., some of my colleagues already applied for better chairs due to back problems etc …. and got turned down. So instead of buying a new chair for some hundred euros that guy was ill for some weeks. Not very clever from an economical perspective but this is how the company works.

Anyway, discussions as this one help me to actually make up my mind about what I mandatorily need, what I want to have and what I can tolerate. And with such a mind, negotiations about reintegration into the work are way easier as I at least know what I want 😉

And about the numerous hints about taking it easy and very careful for a long time. Yes, I have to. Unfortunately, I still don’t have a real feeling how much I can do and where my limits are. Overdoing thins will either work or – if not – take a really long time of resting again. So, feeling fit and healthy again and being an energetic person altogether, this is quite hard and sometimes quite

greetings, clueless with some clues

Wow! Teresa and Helga in the same post 😀 It’s good to hear from you gals again! I’m post GBS 16yrs. now and am having more vision issues( being over tired and stressed are not helpful 😮 ) In looking away from the computer it takes forever to find my place again – same with reading a book. And I often lose my train of remembering what I just read. I WILL NOT let the docs tell me it’s an age thing nor that it is all in my head (pun intended 😀 ) It is definitlely GBS related – so there!!

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