CIDP and Double Vision. Anyone else have this?
AnonymousJanuary 3, 2010 at 8:12 pm
Hi everyone, My first symptom was double vision back in 2003. No one has been able to tell me why I have this persistant double vision independent of each eye. So when I close 1 eye, it is still there. Neiro’s say it is a eye lense issue, optho’s say it is a neuro issue. I was given the dx last month so maybe that is why no one put it together. I am just wondering though if anyone else has suffered from double vision due to CIDP.
I look forward to reading whether or not I am alone on this one….
AnonymousJanuary 3, 2010 at 11:32 pm
I have CIDP and yes, double vision was one of my first symptoms I experienced (along with two numb toes!). I noticed I had blurred vision in one eye (this sort of made things look ‘doubled’ a bit until I got prescription glasses). In addition, I had double vision that happened when both of my eyes tried to focus on an object – I would then see two objects – expecially up close.
My eyesight has never been the same since coming down with CIDP. I also have problems/discomfort with eye movement – I can’t look upwards for more than a second as it is quite uncomfortable.
AnonymousJanuary 4, 2010 at 6:24 pm
I went to my city’s premiere eye doctor last year and he said my CIDP vision was more a bother than a nuisance (or was the other way a round). Well to me its both. Store florescent lights blind me/see double/feel like looking through thick jello/moving white “floaters” across both eyes/affects balance as what I see is off center/loss of “depth of field”. Even have trouble seeing people’s faces/distinguishing the finer up close objects. Signs for nerve related disease-usually a red flag for MS. The eye doctors always said well you CAN see so what’s the problem?? Now I have vertigo/interesting seeing/feeling the world turn sideways unexpectedly.
My neuro said this was part of having CIDP. It affects the nerves in the eyes/brain perception.
I have thought of getting tinted glasses for when in a store.
AnonymousJanuary 4, 2010 at 7:25 pm
OK Say that 3 times real fast! IF you can say it? You’re still of sound mind and body!
My tale started about 4 months before my first ‘nerve attack’. Vision went down VERY noticably during my optomotrist exam. It was he who suggested seeing the neuro-opth., rather than a basic opthomologist. Got in and the guy was amazing! Tested me thru other specialists he knew for heart, vascular and other visual possibles. Came up aces on all of the tests. BUT FOR THE KEY ONE! He had to SEE what was going on w/my eyes WHILE IT WAS HAPPENING! ??? Told to go LOOK in a mirror at my pupils when my problem was ‘happening’ and IF I could, get to my optomotrist so he could see and verify IT happening. It did had he did! Whew! It doesn’t work at 10PM tho!
IN my case? It wasn’t double vision, more like a thick cloudy ground-fog would travel thru the exact middle of my line of sight… It’d either be a white cloud or a gray [in varying shades one]. Quite unnerving to ‘get this’ when you are driving some twisty roads? I got lucky and it’d started to happen on my way to this doc! Well, I was no longer a ‘nutcase’. Since it comes and goes? The doc decided it was a non-aura migraine of sorts. Go figger. Then, it just went away. It comes ‘back’ tho less noticable when I’m stressed or maybe are having some sort of ‘relapse’..[never documentable tho] Sigh.
I was lucky that I didn’t have double vision! I had that before I’d had cataract surgery long before all this! Nasty stuff!
I did read about ‘vision problems’ in papers for the mid-90’s? But those papers are out of date and no longer considered ‘viable’ in the diagnostics aspects used today. I wonder why not? Hope this helps. Start feeling the walls to get around!!! Smiles and good things soon!
AnonymousJanuary 5, 2010 at 9:55 am
This is the medical term for it. You might want to google this and cidp and read up. My daughter had it and she got over it with ivig. Emily’s mom is very knowledgeable on this. I agree with the statement that it may be indicative of some sort of relapse. Our neuro says that remember that there are nerves in your eye that can also demylinate. Our doctor told us to remember that when my daughter turns her head to see single that we should let her compensate on her own. I feel for you.
AnonymousJanuary 5, 2010 at 2:22 pm
Over the past couple of years, at the end of the day, when I was more tired, I was seeing double.
Then, about a month or so ago, I started seeing double all the time.
Anyone who has CIDP should be seeing their ophthalmalogist every 6 months anyways, as CIDP can affect the eyes.
So, I went right away to my ophth. doc.
The used a machine as they thought the knew what it was, and sure enough, the machine proved them correct. The CIDP is affecting the nerves controlling the muscles controlling the eyes. It is called, “Strabismus”, or diplopia.
What made me angry, was that one of the doctors I was seeing for a couple of years at that office, I had been telling him about at days end I was seeing double, and he shrugged it off as saying that it was just your CIDP causing it. THIS time, I have a good tech that I see every time, and I told him I wanted to see a different opth. doc, and he suggested one of the best ones in the office, (it is a large office of about 8 different docs). He immediately knew it was Strabismus, knowing that I have CIDP.
So, he sent me to a place in the next town, that makes glasses, but I was there to have prisms put on my eye glasses. The doc had said that the condition will get worse, and there was no sense in getting actual glasses each time, when they have prisms that can actually go right over the glasses I have. So, when it gets worse, I am supposed to go back to him, he uses the machine to get the prescription needed for the prisms, then I go back to the eye glass place for new prisms. By the way–the prisms on my eye glasses work well, though, still at the end of the day it gets worse lately, as I think it is already starting to get worse again.
AH-but there also may be a danger here. I happen to have my regular neuro apptmnt a few days later. He immediately got worried, as he told me Strabismus can also be a sign of Primary Lymphoma of the Brain or CNS Lymphoma, or lesions on the brain particularly Cranial Nerve III (Occulomotor), Cranial Nerve IV (Trochlear), or Cranial Nerve VI (Abducena), or brain swelling.
He immediately scheduled me for another brain MRI. Luckily, everything was okay with my brain, (I just have an old lesion). But he also ordered some blood tests for something else he didn;t tell me, which I see him again in 2 weeks.
So, to all the above saying they are also seeing double vision–there is concern here. First-go to your ophtalmalogist and get tested for Strabismus, (diplopia). If it turns out to be that, prisms will solve the immediate problem. But, then go to your neuro, and then tell him you have Strabismus, and see if he wants to test you for the brain problems. Don’t wait on this, since it could be quite serious.
I personally am dieing from what CIDP has done to my body by hitting my automonic system, as told by 3 of my doctors, and my body continues to deteriorate. Every 4 to 5 months, something else happens new, like I was just told last week, that I have bad osteoporosis, due to the chemotherapy I have been on for almost 3 years. Nothing bothers me anymore, since I am used to getting new things all the time now. The Strabismus was another thing added last month.
Like I said–if you wanna know something–usually ask Ken–he has everything…LOL
AnonymousJanuary 5, 2010 at 8:53 pm
Wow! Thanks everyone! I really got a lot from all your postings! Ken, I am printing yours out and taking it to my ortho to have him test me. What I have is Monocular Diplopia (independant of each eye). When I close one eye, my vision stays double and vice versa. Selahsmom, it sounds like your daughter has Binocular Diplopia, since it goes away when she turns her head. I am glad to hear that it corrected itself with IVIG. I am starting my first round this month and your post has given me some hope!
Thank you all for sharing your experiences and your support. I will keep you posted on my treatment (as soon as my insurance approves it)!:cool:
AnonymousJanuary 5, 2010 at 9:44 pm
My daughter Emily has Binocular Diplopia – it affects her right eye. Her eye will gradually stop being able to look right & will end up facing in towards her nose if left untreated as well. MASSIVE amounts of IVIG was needed to fix it. Now it’s the first symptom of a relapse – which does come in handy.
Have you had a brain MRI with contrast? That will be able to tell if you inflammation on the cranial nerves. I was originally told the inflammation is what causes the diplopia but Emily had inflammation on 3 of her cranial nerves (cannot remember which ones at this point in time) during her first brain MRI in Dec 2005. The inflammation was gone in Nov 2006 but her eye is still the first symptom that shows up. So I’m not sure if I believe that or not.
Emily routinely gets checked out by an opthamologist. Once a year he dilates her eyes – in the beginning he did that every 6 months.
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