AnonymousAugust 29, 2007 at 8:03 pm
I was wondering if anyone else has had eye damage due to CIDP as I now have nerve damage to my left eye which has left me blind in that eye.My doctors cannot say if it will progress as my CIDP has from left to right. Any thoughts or ideas greatly needed.
AnonymousAugust 29, 2007 at 11:11 pm
Paul, I’m sorry to hear this ugly disease has done more damage. I have more floaters in my vision field, and have blurry/double vision, but it hasn’t progressed to much more then that. I wonder if they can try the medication on you that they use for md. It might help to stabilize your vision. You are in my prayers. Take care.
AnonymousAugust 29, 2007 at 11:56 pm
Hi Paul, sorry to hear about your vision troubles.
Since my diagnosis of CIDP I have developed a cataract in my left eye and very possibly a very small one in my right eye. I suspect that may be due to the prednisone I took.
I am having more and more trouble with my vision. Things are blurry even with my fairly new glasses. Getting more blurry all the time. I am not due to see the eye doc for another 2 years, but my vision is becoming so blurry that I may go back much sooner for new glasses. Reading has become very difficult and small print impossible to read.
I really am sorry that you have such damage to your eye and sure hope that it does not progress to the right eye. Sorry I can offer no advice on this.
AnonymousAugust 30, 2007 at 9:46 am
I also developed cataracts in both of my eyes & had to have cataract surgery back in Sept of 2004. They inserted a lens in each eye so that now I am 20/20 in both eyes, but they are not the same as they used to be. Blurrier at times, get tired very easily, reading is much harder now. But I know it is from the solumedrol infusions that I had weekly for 21 months. But I don’t have any real loss of vision, it just isn’t the same as it used to be. I am guessing the fatigue has something to do with my vision as well.
AnonymousAugust 31, 2007 at 12:55 am
My vision is blurry and store florescent lights make it worse. The neurologist told me the IVIG would help but that vision is one of the last to benefit.
On this FORUM others have mentioned vision problems-like double and dry eyes.
Of course medications can make cause this or make it worse.
AnonymousAugust 31, 2007 at 5:01 am
Sorry to hear of your vision troubles adding to this cluster&%@# we all know as cidp. Although not considered connected by my former neuro, I experienced vertical double vision for about a month while in college in 1984. Even given the fact I’ve schwanomas on an optic nerve.
Harsh lighting, bright sunlight is a killer for me. Always been addicted to Ray-Bans. Just attributed it to having blue eyes. Bright, properly directed task lighting is different when I’m trying to do something. Everyone needs that.
Looking back, I feel this has been with me much longer than anyone realizes. There’s something to be said for knowing more about the body one actualy lives in than the one poking it with a stick. Keep the faith Paul.
AnonymousAugust 31, 2007 at 1:33 pm
I’m so sorry for the loss of your vision to your left eye. Too bad it couldn’t have been caught sooner.
My mom’s eyes are affected by the cidp. First on the right side, but now it is mainly on the left. This time her eye won’t close, where before the right one wouldn’t stay open. She has seen her eye dr. and they’ve prescribed an ointment and drops to keep the eye moist. It seems to be getting better.
When she really relaxes it will close a little more. They tell her to keep putting those drops in so it won’t get dry.
Good luck and stay positive. Take care.
AnonymousSeptember 1, 2007 at 11:00 pm
find out is to be tested for all sorts of various obtuse ‘things’. I say this because I too had a problem vision-wise about a year after my onset that got progressively worse but after 6 months abated [mostly]. Interestingly tho, about 2 months BEFORE my onset, my vision changed dramatically in about three different directions. Lenses I’d ordered did not work after one week of being in my frames…they were a big change and I changed back to the old lenses then to a different number a year later.
I did not have vision loss as you have had, but it has been reported in many medical research papers regarding all sorts of neuropathies, mostly diabetic.
I was lucky enuf to find and see a ‘neuro-opthomologist’ in my area. Finding such doctors is hard as they are either listed as only neuro’s or opths’ in the directories…you really have to ask around [I got the n/o’s name from my optomitrist] and he passed muster when I webbed up his credentials. Not only did he review all that my neuros had tested me for to diagnose the CIDP, but went a step further to check out everything, and I mean EVERYTHING that could either be vascular or migraine[something I never thot I had a problem with] issues and even sent me for testings and opinions from other specialists. The out come of it all was for me, diagnosis of a ‘non-aura migraine’ type of ‘event’. No treatments changed as my problem did not get worse. It was definitely scary during the interim.
Ironically, I had had cataracts at a somewhat early age and surgery/implants done over 15 years ago now, so I know the two are not related. But I do have scar tissue on the eye from the surgery…
IF you can find a neuro-o…it certainly couldn’t hurt to get an extra opinion – just to knock a few more tests off your list, so to speak. If you can afford it.
It’s truly a bad deal when vision is affected and you have the sensory issues as well, as the eyes work so hard to help you with where you are in time and space. Not really knowing where you are putting your foot is an adventure none of us want to experience! But we do every day.
I could probably find sources for you or anyone if you wish…I’m not good at ‘cutting and pasting’ as many here are. PM me if you want me to dig up what I’d read.
I hope this helps.
AnonymousSeptember 2, 2007 at 3:16 am
My daughter, Emily’s right eye was affected. It was paralyzed & turned into her nose. It started off with blurred vision & then slowly she lost the ability to move it right. LOTS & LOTS of IVIG were the only thing that helped get it better.
Almost 2 years into this disease & her eye dr says that her eye movement is at 95%. He said in May that it wouldn’t get any better than that but at the August check up he said that it had improved still. She has better control over it now.
It’s very rare that people with CIDP have eye involvement (or so I’ve read).
AnonymousSeptember 3, 2007 at 1:10 am
I had three Eye Doctors at three different places without telling two of them what was wrong and they all come up with optic nerves damage which cant heal and wont heal and they all said they don’t know if it will progress as my cidp has done, as not to many people really know this horible thing and what it can do. Because everyone is different to the other they dont know what can be attacked.
Thank you for your Reply
AnonymousSeptember 3, 2007 at 10:34 am
Have you had an MRI of the brain and spine?
I ask because my daughter had both done & it showed inflammation on her cranial nerves. Almost a year later, she had another brain MRI & the inflammation was gone. She still has her eye problems if she goes off of the IVIG. But as of last November she still had inflammation along her spinal cord from the lower lumbar down.
The eyes being affected by CIDP is very rare. I think I read somewhere that said only about 3% of CIDP’ers have this problem. I could be slightly off with that number though.
There is a condition called optic neuritis. I wonder if you’ve been checked for that. Here is a link explaining it: (You have to copy & paste into your browser)
Hope that helps.
AnonymousSeptember 28, 2007 at 8:58 am
I’m a 78 year old male, diagnosed with CIDP at Mayo Clinic 1996. Have had fairly good vision, but had catarac removed on right eye 2004. Have had IVIG some 8 years ago (no positive results) Had plasma exchange 6 months ago (no positive results) Started 60 mg Pretisone 4 months ago (no positive results) After two months, started slow weaning off. Weight gain, mood swing, unable to sleep, hoarseness,moon face, and worst of all not able to read easily. Just had eyes examined and new glasses that had me at 20/20 some 6 months ago. Am going to wait until completely weaned off the roids and go back for another exam. Sure hope this isn’t permanent. Will keep board advised.
AnonymousSeptember 28, 2007 at 1:28 pm
I have eye damage as well, mostly in my right eye. It has gotten better but I still can’t read for very long. I have only a small visual field in my right eye – sort of like looking through a paper towel roll – just a little tube of sight – but I find it doesn’t hinder me that much in getting around. If I try to use that eye to focus as in driving, reading or watching TV it will start to hurt, blur and get double vision. I still have problems with them both being dried out and the tear ducts clogging up but it’s only rare that they have problems opening or closing now, usually just when I have overdone it.
AnonymousSeptember 28, 2007 at 2:10 pm
of the issues [pardon my pun? Could NOT RESIST!] I had my annual eye exam for lenses [or not] about 8 weeks ago, my Optomotrist [who’s up to date on stuff, not a mall guy by any means] Suggested that I come back in another 2 weeks to ‘see how things’ are…on the first exam Vision noticably had changed but not substantially? Second visit ALL things were back to status quo. Surprisingly I [I]think?[I][/I][/I] the changes can be somewhat linked to environmental stresses [tested during a heat wave…got a bit dehydrated] and it was close to my infusions.. Somehow all we experience by way of changes because of infusion..aren’t all really recorded?
I keep such a ‘red alert’ aspect about my vision simply because neuropathies from diabetes and those who have MS have these issues in some way or other on about a 20-25% basis…based on a whole heap of bulletin boards and medical papers I’ve read…We have similar issues.
I know that I was almost totally freaked out with the vision issues, but that alternative causes were ruled out..It’s a small comfort, but a comfort all the same…It’s checked off the list and out of the way. For me the cataract issue was definitely hereditary and at an early age…I’m fairly sure that it had no relation to the CIDP …but w/o family genetic testing it’d never be speculation let alone proven…But then I’ve other issues that I have now, which COULD have been tested at time of either onset, or diagnosis…and could have added dimensions to diagnostics, but at that TIME and place simply weren’t warranted.
Our docs are under enormous pressure to do or go any extra step or mile in diagnoses. And, we do NOT live in any form of test tube environment. The ‘would’ haves or ‘should’ haves are not an issue here…there was no clear reason to test! Damage done, get on with treatment and healing as best possible. Genetic testing is expensive…I’m gonna save the $$$ for testing on things that count in getting relief now. Genetic tests do not do that….it’s simply an indication of ‘possibles’…
Go out and buy a lottery ticket! Far cheaper, with better odds and less potential [insurance liability] consequences…
PS: OF COURSE any eye doc isn’t gonna be ‘familiar’ with PN and the consequences! But, if you link analogies to such as diabetes or MS I bet you will get more ‘respect’…vision issues in PN are, I believe in the ‘autonomic’ category, not either the ‘sensory’ or ‘muscular’. Ergo If You help make that ‘mental leap’ connection or whatever you could get a lot further…Hope this helps.
After cataract surgery over a decade ago, all was fine.. I read and read voraciously! Since I acquired CIDP, I have not read or finished any book in print…it’s been a long time. I’m grateful to the internet, as I can read and ‘register’ the ‘screen’ just ‘fine’ – the PAPER i have problems with. Many PN GBS and CIDP folks on boards such as this ‘note’ the ‘reading’ issue as a problem…at first I attributed it to the meds…my problem did occur before the meds came into play tho..so I’m thinking it’s part of the diagnostic symptoms, tho never listed as such.
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