Once again…new member…Recovery Issues, specifically vision!

Hi Rex and welcome.

You seem to be doing fantastically so far! You were only diagnosed with gbs a few months ago, and regardless of how mild your case was it does take a long time to recover. I could very well be wrong here, but because your diagnosis was so recent, I would tend to think that you are still in recovery phase, even though you have improved so well. But, anything is possible with GBS :confused: .

I know you have probably read a lot of posts on here, and Im sure you will here from many members who are in recovery years after being diagnosed, as well as those who have relapsed.

“Keep on keeping on”, and do keep us posted on what is happening.

Dear Rex:

Welcome to this site. I am glad you found us, but I also wish you hadn’t heard of GBS.

Vision problems are caused by nerve damage to the muscles which aim and focus your eyes. Your vision will slowly improve over time, but to what degree is anyone’s guess. The eyes need to work as a team, but GBS affects them asymetrically. Usually the nerves to your left eye are more affected. There are exercises you can do that may help your eyes work together which are similar to exercises for a lazy eye. I am not sure you want to try them right away because you have a nerve problem and not a problem with weak muscles. If you can find an opthamologist who is willing to be creative, he may be able to help you. Right now, my feeling is that you may be better off doing nothing and just giving your nerves a chance to heal.

One thing I worry about is that you may be over-doing it and this is making things worse. With GBS, your nerves become extremely inefficient. This inefficiency drains your energy reserves at much higher rate than most people who haven’t had GBS can appreciate. Over-exertion will starve nerves of their energy and residual effect will worsen, including vision problems, weakness, pain, and the shakes. More exercise will leave you with a bigger energy deficit, and at a certain point and you can actually get weaker, as a result. The rule of thumb is that you shouldn’t do any workout, exercise, or activity which requires more than 12 to 18 hours to recover 100% of your energy reserves. Only you will be able to know exactly how much of a workout will be beneficial, and at what point it becomes harmful. Listen to your body. This is the only way you can learn the right mix between exertion and rest. You can still workout, and you can still be strong, it is just going to take a bit of energy management and vigilance to what your body is going through.

Rex, I wish you all the best of luck. I hope you keep us informed as to how your continuing struggle with GBS goes.

Lee

Hi Rex, i too have vision problems. it gets worse when i get worn out. actually that is how i can tell myself to slow down or stop and rest, according to the way i see. there are alot of different vision stages with me, it goes from blurry to double/blurry and spots, sometimes i can’t even read large print-thats when i know i will be making a trip to the hospital soon. take care and rest.:)

Rex,

To venture slightly off the subject of relapsing, residuals etc., you bring up such an interesting point with regards to fitness and recovery after ‘getting’ gbs. I’ve been considering starting a thread asking the question of how fit people were when they got it. Besides being 18/19 years old (which I think played a huge part), I really was super fit at the time of diagnosis. Even though I was totally paralyzed and had a trach, my father attributes the fact that I was so fit to my wonderful recovery (pity about the couple of decades after). After reading so many posts where people mention that they were very fit before contracting gbs, it would be interesting to find out what role fitness played in the recovery, or (oooh, [I]and I know Im going to get some ‘scoffs’ here[/I]) if there was any relationship between being fit and getting gbs. I mean, if one is fit you generally cannot tolerate alcohol very well, could one be suseptable to certain things being fit? (normally be the oposite) Sounds really silly, but it would be interesting, and … something we will never know Im sure. :confused:

Welcome Rex,

Double-vision for the first 7 months after my dx, and now nearly six years later, like Cheryl noted, my vision gets worse with fatigue. Generally by 6pm daily, even with the “specs” on I have double vision…..just the muscle fatigue/nerve fatigue setting in at the end of the day. Knowing that there is nothing wrong with my optic nerve makes this phenomena bearable.

Re//being in good shape before GBS……yes, I was in very good shape, very active, very fit, yet I did not get a “mild” case……..I got slammed……[U]hard.[/U] Where the having been in good shape pre/GBS paid off according to my doctors was evidenced by my not succumbing to my illness. What [I]may[/I] have been a factor in how severely I got hit was the fact that it took nearly a week for a correct diagnosis…..wasn’t dx’d until respiratory failure……which delayed the start of treatment that possibly helped slow the damage being done…………plus I had symptoms in retrospect for nearly three weeks prior to my acute onset and collapse….so damage was being done before it was bad enough to get me to the ER……..

best wishes to you,

cg 🙂

Hi again,

I forgot to mention that perhaps the most important determining factor in how “mild” or “severe” the GBS attack is the etiology of trigger of the GBS attack in the first place…..ie// GBS patients who get GBS following infection with campylobacter jeujeni infection historically have [U]very[/U] severe cases of GBS. It’s unlike Polio for example where an actual virus was determined to bring about the disease. GBS can appear after so many different triggers, vaccinations, cj infection(food poisoning), upper respiratory infections, epstein-barr virus, etc. with many GBS patients never knowing exactly what brought about the auto-immune attack of GBS and they end up going down in books as idiopathic in source. Different infectious agents trigger different responses in the body, researchers have recently discovered that GBS patients who have extensive paralysis and cranial nerve involvement including paralysis of the muscles around the eyes have different antibodies in their system than those who did not have eye muscle involvement……so I would think that whatever started the process off in the first place determines how mild or severe the case is. As my neuro says, each and every case of GBS is unique to each and every patient…….

best wishes,

cg

Canuckgirl,

Can you refer me to reading on the cranial nerver involvement? I was diagnosed in 2001 and still have severe nerve damage on the right side of my face. Most people don’t notice unless they have to look at my face for an extended period and then they have that look on thier face like “what is wrong with her face?”. I have not found out what version or virus I may have had. They only link I can make is that I had chronic ear and sinus infections the 4 months prior with chronic fatigue hitting me a good 1 month prior to my dx on Sept 1. I still have floaties in my right eye and my heard constantly beats out of my chest, I’m tired of trying to get docs to listen….any reading suggestions would be apprecialted! KTWomack

Hi KT,

I’ve just sent you a private message with some info for you, hope you find it helpful,

CG

Hi guys. I also have trouble with vision. I used to love to read but now can only do so for short times. Not only is it difficult to hold a book for any length of time but also my eyes don’t want to focus. I now wear bi-focals and not sure if it is due to gbs or just a natural progression. I had trouble in the hospital looking at the calendar because it was hard to separate the days, they all ran together. I usually lay down in bed at night and try to read for a little while, even though i know my eyes are already tired, this is the way i have always relaxed at night. Old habits are hard to break…lol
Take care and good luck

Sherry

Welcome Rex,

It sounds like you are progressing very well.

I was discussing vision problems with my husband who is an optometrist. He says that the nerves controling the muscles that cause the pupils to dilate and contract are part of the automomic nervous system. If the nerves that control these muscles have been effected by GBS, the automatic contracting and dilation may not work correctly, which can be why some of us experience vision problems post GBS.

Best wishes for your continued recovery.

Sherry,

Have you tried listening to books on tape or on MP3 player? Our local library (and probably others) have a system where you can download audio books from the library onto your computer and then onto an MP3 player. I use this constantly and it’s great.

Hi Rex,

At first I didn’t notice a problem with my contacts until I had problems getting them out of my eyes. I stopped wearing them for a while and went to the eye doctor for help.

After he checked my eyes, he said that my eyes would have to be remapped. This was unusual. My prescription changed a bit and the contacts were no where near the original placement. After I got the new ones, I didn’t have any problems.

Well about 5 1/2 years later, I notice that I couldn’t read far away, my eyes would get tired, I had problems reading close up, and it seemed like a fog would form. I would clean them and still had the fog.

I went to my doctor again thinking, since it had been over 5 years since I saw him, that my contacts were getting old and I needed a new pair. That was one of the problems, but the main problem was that the contacts had slipped down and weren’t in the correct position.

There was no prescription change, but another repositioning of the contact. For some reason, my eyes had changed shape again, and the contacts couldn’t find a good spot to sit. Well, I can see great again.

In regards to your continuing to try to keep up with your life of exercise as you did before GBS, you are actually defeating your purpose. When I was in physical therapy, they stressed that I needed exercise the rest of my life, but if I over did the exercise and anything else, I would actually cause my recovery to go backwards. We have to push a LITTLE, but never stop. I was always told, “If you don’t use it, you will loose it.” We start at square one and work up adding on as we go. It is frustrating and unfair, but thank God we can improve.

Good Luck Rex,