AnonymousMarch 28, 2007 at 12:29 pm
Hi all. I’ve searched the forum and noticed that some of you have experienced vision problems. I have been having trouble focusing for about a month and have also had 2 episodes of double-vision (while at work — Yikes!). I saw my neuro yesterday and otherwise all is well. She is ordering blood work, sending me for a brain MRI/MRA, and is referring me to a neuro opthamologist for a work up. I made the eye appointment yesterday and the office said it would take 3 hours. I can’t imagine this will be pleasant. I dread regular eye exams and those only take about an hour.
Has anyone had any experience with a neuro opthalmic workup? Any info would be appreciated.
AnonymousMarch 28, 2007 at 4:41 pm
When I was in the hospital about 4 years ago (they thought I GBS because I went from walking to not within 1 week) I had trouble focusing. The few times I have relasped I also have had trouble focusing. I like to read and sometimes when I read to long my eyes get “weak”. I have had and MRI…nothing showed up and I went to an eye doctor and nothing showed up. I can see everything…but when I try to really focus it bothered me. I have be in “remission” for a long time and have not had the problem since my last relapse.
Hope this helps…
AnonymousMarch 28, 2007 at 6:22 pm
The last couple of days I have been planning to ask the same question: “Does anybody else have problems focussing every now and then?” because it’s not happening all the time, but suddenly it seems like I’m inside a kind of bubble that keeps me from seeing clearly. I think of it somewhat like being dizzy, but my balance is still OK, no vertigo.
I had my eyes examined by a specialist some years ago (this has been going on for many years, even before I knew what was wrong with me) but he couldn’t find anything wrong with the parts of my vision he was checking. I’ve had MR a couple of times, nothing wrong showed up there either.
AnonymousMarch 28, 2007 at 6:39 pm
Oh my gosh! Thank you for bringing this up – I notice when I start getting symptomatic that my vision starts to get fuzzy, too. Allaug, I know what you mean by the “bubble” – it’s kind of like your eyes are seeing from the back of your head and everything is far, far away! Don’t want to think about another doctor visit – I have too many now! Good luck and good health!
AnonymousMarch 28, 2007 at 6:48 pm
My daughter has double vision when her right eye is paralyzed (she can’t turn it to the right). She’s an atypical case of CIDP though.
At Emily’s 1st eye check up (and once a year) they dialate her eyes with 2 or 3 different kinds of eye drops. I don’t think they hurt or anything because she didn’t cry and if it had hurt everyone in the whole dr’s office would have known about it.
She has to wait 45 minutes to 1 hour, in the waiting room, while her eyes dialate. She says that it’s hard to see things during that time.
Before they put the drops in they did a regular eye exam & had her look at letters & pictures on the computer screen. After her eyes are dialated they have her do that again while the dr looks into her eyes.
Then he gets some different oval shaped glass things and puts those over her eye so she has to look through them & he has her try to identify shapes & letters again.
It does take about 3 hours and it’s NOT painful at all. Emily actually enjoys her eye dr visits.
Make sure that you wear a pair of dark sunglasses after your appointment. Your eyes will be sensitive to the light. You should also call the dr’s office & ask them if you will be able to drive home by yourself or if you will need someone to drive you.
AnonymousMarch 28, 2007 at 7:49 pm
Well, I just had the full workup for Horners Syndrome because my right pupil stopped dilating. The tests included MRI of brain, orbits, throat, carotid arteries and chest, with and without contrast. The MRI session is long — really long — 1.5 hours. I had a little help with anti-anxiety meds, I’d highly recommend this route if you have clausterphobia. Open MRI doesn’t work for these specific tests.
I also had three sets of drops in my eyes over two separate days. The cocaine drops were uncomfortable. The 3 combined gave the doc (neuro-opth) enough information to isolate the neurological problem to a first, second or higher order nerve, so he know where to look for nerve damage on the MRIs.
Other symptoms: face has been insensitive to touch, eyes are dry and irritated, right eye blurs, and occassional, sharp, stabbing pain in that eye that last for a couple of seconds and then disappears — like a sharp cramp.
My main neurologist says its not related to CIDP, but there’s no way I actually believe him, lol.
Good luck to all of you undergoing these tests. Compared with nerve tests and lumbar punctures its a piece of cake!
AnonymousMarch 28, 2007 at 10:54 pm
While in the hospital I seen the neuro opthamologist twice and then on a regular visit for months and then started to spread the appointments out over a longer period of time. None of what he does hurts or causes me any pain. It is just boring to me! But what counts is he is seeing better results the longer I am recovering. Having double vision for over 10 weeks was aweful. No tv or reading was horrible and boring. It is now better and the peripheral vision is still getting better. The field of vision has increased to get better. Take time the optic nerve and all the nerves in the eyes take time to get better just the rest of our bodies. Hang in there and I am glad you are going to a neuro opthamologist. Keep up the good work on getting well.
AnonymousMarch 29, 2007 at 1:02 pm
Thanks for the reassuring info on the eye exam. Any exam with the word “neuro” associated with it makes me worry.
I can’t imagine that my vision problems are anything but related to the CIDP. Never had this before. Also, my doc always asks about my vision and checks my eye movement at each exam. The good news is that she didn’t see anything wrong with my eye movement. But because of the CIDP, she wants a very thorough workup to determine if this is neuro related.
AnonymousMarch 29, 2007 at 6:57 pm
I was having intermittent blurry vision for months, mostly when I was tired. I finally got in to see a neuro-opthalmologist a few weeks ago.
The firs thing he said to me after taking my history was “I have seen some interesting things in CIDP patients’ eyes”. Thanks for that, I thought. On the other hand, it was reassuring to know that he was actually familiar with the condition!
Anyway, there is nothing wrong with my eyes that is directly related to CIDP. I have some astigmatism that wasn’t there before, it is possible that this is connected to steroids (retaining fluids leading to change in the shape of the cornea), but it doesn’t have to be connected with that.
I have a prescription for glasses now (never worn them before), and the word is that these are age-related changes to my eyes, possibly accelerated a bit because of the stress on my body over the past few years. The fact that I was able to focus as well at some times is easily explained by fatigue.
A bonus of all this was getting to try on some really nice frames, and then get a pair of glasses that I really like.
AnonymousMarch 29, 2007 at 10:15 pm
[QUOTE=Caryn]Has anyone had any experience with a neuro opthalmic workup? Any info would be appreciated.[/QUOTE]
Forgot to write about that the first time … the exam took a couple of hours because your pupils need to be dilated, and it takes a little while for the drops to work. Step one was the opthalmic assistant taking a brief history and putting the drops in. I can’t remember now whether she did the colour blindness test (you look at some pictures with numbers or letters “hidden” in a pattern) and the eye chart, or if that happened later. Step two was waiting for a while. Third, the doctor took a longer history: onset of symptoms, date of initial diagnosis, dates when I went on and off particular treatments, response to treatment, etc. Fourth, he anesthetized the surface of my eye with some drops and I think he took a pressure measurement. Fifth, he had a look inside both of my eyes. I had my head in one of those contraptions of theirs and had to look directly at a light while he looked around, which didn’t take very long. Then I had my head in another thingy where different lenses are clicked into place to see what kind of vision correction you need. Then he told me he didn’t see anything connected to nerve problems, or any steriod cataracts, and he asked me what kind of work I normally do, to see if it was worth writing a prescription for glasses or if this was something that could be left for later. Since I’m going to try to go back to grad school part time, reading correction is very important, so he wrote the prescription.
Then I went outside. The sun was shining and I couldn’t see anything very well because of the drops. I waited for my ride to come, and went home.
I’m not sure if he would have done something else in the event that he _had_ seen something. The exam I had was a bit of a nuisance because of the dilating drops, but nothing uncomfortable or frightening.
AnonymousMarch 29, 2007 at 10:25 pm
Oh yes the drops! Were they the yellow ones? I only got those once so far and they did not tell me they were not clear. I went shopping after my appointment because I would be too tired to go back out later in the day. So on the way home I went to the bank, got gasoline in the car, some grocery shopping and was very happy. People were so friendly, I thought it was the weather was warmer than usual and the snow had completely melted….Talk about melting….they were looking at my eyes and thinking….oh she should take those eye drops off. YIKES wish they would have told me! I actually scared myself when I looked in the mirror! 😮
AnonymousMarch 30, 2007 at 8:02 pm
[QUOTE=LadyKITUSA]Oh yes the drops! Were they the yellow ones? I only got those once so far and they did not tell me they were not clear. I went shopping after my appointment because I would be too tired to go back out later in the day. So on the way home I went to the bank, got gasoline in the car, some grocery shopping and was very happy. People were so friendly, I thought it was the weather was warmer than usual and the snow had completely melted….Talk about melting….they were looking at my eyes and thinking….oh she should take those eye drops off. YIKES wish they would have told me! I actually scared myself when I looked in the mirror! :eek:[/QUOTE]
I didn’t notice any colour. However, I put on sunglasses right away because I couldn’t stand the light of the sun.
Are you saying you drove after having your pupils dilated? I can’t imagine doing that. I could barely see even with the sunglasses. Outside, everything around me was bright and diffused, sort of like being in a thick fog bank on a sunny morning. I would think that operating any sort of machinery would be a no-no, but maybe it is different for different people.
AnonymousMarch 30, 2007 at 10:34 pm
Keith I think it is different for everyone, but yes I have drove using sunglasses before. I just never had the drops that colored the circles under my eyes yellow before. Just not yellow, but NEON YELLOW! I would not have drove and went and completed all my chores if I was not able to see correctly. But I am going to ask him next visit if you should not drive when receiving those types of drops. I had never had any drops before this appointment. They kinda reminded me of the drop they gave my pets to make sure they did not have scratched Cornea when we had gone in with eye problems. I remember it was windy that day and cold but not sure if it was cloudy….here we have over 72% of our days are grey and over cast. I very seldom wear sunglasses. 😎
AnonymousApril 2, 2007 at 1:18 am
I didn’t know there were neuro eye specialists?? My neuro told me that vision is usually the last thing that is healed/improved with treatment. For me that’s IVIG and now added Methotrexate.
Every neuro I’ve seen is knowledgable with the CIDP vision problem and I do have extremely dry painful eyes. Got this darm infected eye glands again in 3 months. The eye doc sez it just happens-didn’t connect it with CIDP ’cause I keep asking.
I was always told that vision problems like mine were a red flag for nerve damage.The doctors said it was probably due to a medication I was taking. Well, it wasn’t. It was CIDP.
I describe my vision as looking through thick jello.Add a loud crowded public place and that’s too much.
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AnonymousFebruary 7, 2007 at 10:43 pm
Has anyone had vision problems such as double, focusing. I knock over water glasses on table, pour coffee over rim of cup, lose step walking or going down or up stairs, covering one eye, no problem, sp I wear an eye patch.. Opthamologisr says eye muscles ok, neuro said it could be my myasthenia gravis, ordered a brain MRI to check if something else is going on. She should have it end of week and will call. Wonder if other GBSers have had a similar problem.
AnonymousFebruary 7, 2007 at 11:17 pm
Peggy I met a lady in rehab that got GBS and her eyes crossed . She had to wear a patch. Thats what is so strange and unpredictable about this is nothing is “normal” yes some similarities and there are many but none are a given. My symptoms are similar to one and another and another but they have some I don’t have. It makes it really hard to have a “normal” treatment that works on everyone. One thing that does help everyone is the MIND, keeping a positive attitude and doing what your told to do helps also. Never lose your faith that you will beat this. It may be a long battle or a short one but keep fighting. This FORUMLY helps a great deal also.
AnonymousFebruary 7, 2007 at 11:35 pm
I was still in the hospital and was told by one of the nurses to ask to see a Neuro-ophthalmologist. My Doctor wrote up the orders and I was in his office twice while I was in the hospital and then continue to see him over the last year in his office near my home. Remember GBS/CIDP and all the variants effect the nerves and the Optic Nerves could be effected. Also the pressure in the eye can rise and cause the periphical vision stays effected for many months. The field of vision comes back slowly. Also the nerves have to be able to heal some so they can make the muscles track together before the double vision goes away. I was given the suggestion to wear a patch but I also had bleeding in the eye and while walking I would completely loose my vision. So I did not want to cover an eye and have that happen while in rehab and trying to learn to walk! I was asked to use crayons and color in a large childrens Christmas coloring book and that concentration helped me with the focus. I was also told to look at the tiles on the ceiling and trace my numbers and letters with my eyes. Z was easy and the crazy 8 was hard it would make me dizzy or I would get nauseated. That taught me to slow down and concentrate on what letter or number I was doing. But now I am able to drive and all that stuff has improved greatly! Be patient!
AnonymousFebruary 8, 2007 at 6:45 am
I had double vision for 3 months and still three years on have some blurred vision in my right eye. I wore an eye patch over the affected eye until the double vision stopped. It was the nerves in my right eye that were affected. It is GBS related.
Best of luck
AnonymousFebruary 8, 2007 at 9:45 am
Check out the Miller Fisher topic on the main menu. Most of us MF GBSers have had vision problems due to the optic nerves being affected. I had double vision for about 4 months, and still have fuzzy vision when my eyes get tired. In fact the double vision was the last thing to heal.
AnonymousFebruary 8, 2007 at 3:41 pm
YES, Emily has right eye paralysis & when she’s in a relapse she has double vision & pain in her right eye when she looks right.
Her last brain MRI (11/06) showed no cranial nerve inflammation but she still has eye problems. I think that her muscle is really weak from being paralyzed for 5 months in the beginning of her disease when we didn’t really know what was going on.
Emily wore an eye patch & it didn’t really do much for her. The only thing that seems to work is high dose IVIG. We had to start off at IVIG 2 times a week and now she relapses after 12 days.
Good luck. I hope you find some info out. I know there is a surgery that can be done to correct the eye problems. I’m not sure of the name or if you would even be a candidate for it but maybe you could ask your eye dr about it.
AnonymousFebruary 10, 2007 at 7:26 pm
Hi Peggy 80, I had GBS/Miller Fisher – 12/16/05 – as of today my vision has gotten better but still have some double vision, eye Dr. said it takes time for the nerves to come back. I threw out the eye patch and I drive without it, carefully when I look right. The right eye is not as good as the left, but each week it gets a little better compared to last year. When I go to the movies I see 2 for the prices of one (smile) it will get better just keep going.
AnonymousFebruary 11, 2007 at 1:03 am
I posted another reply, but don’t see it on the web. My brrain MRI is normal, neuro wants me on 10 mg prednisone daily, imuran 2xday, and mestinone. She is treating me for the myasthenia gravis I have (was in remission until GBS hit me 5/05 ). I’m in a quandry, scared taking that medication because of what it did to me before–destroyed bone fusion for laminectomy, necrosis of the hip and cataracts. Kit, Debbie, Cheryl, Victoria, Kelly, you are all telling me that you had and have almost my same vision problem and didn’t take the stuff my neuro prescribes. I don’t know what to do. I’m taking the nasty meds, but don’t have a good mindset about it. Thank you all very much. Kelly, I wish your daughter well and will pray for her. I don’t know how Jerimy manages all his autoimmune diseases. I have 3, that I know of, and that’s too much for me, although pernicious anemia is easy enough to deal with–a B12 shot once a month, MG is a sneaky, chronic one, and GBS is still with me–can’t walk, tinkling hands and legs, shaking hands. I’m not complaing about GBS, because I’ve come a long way in almost 22 mos and having this support groups is a blessing. Don’t know what I’d do without you.
AnonymousFebruary 11, 2007 at 1:15 am
Tim, I forgot to thank you for your reply.
Victoria I just checked out the FM you referred me to. I am going to call my neuro Mon and ask her if I could have FM, a residual of GBS, which I’m not sure she know that much about Thanks. It makes me feel better just know that it may be something I’ll have to live with, like the rest of you, and noit have to take all the medication she wants me to take.
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