I've had cidp for 2 years that was 1st diagnosed as Guillain-Barre. I have been on plasmapharesis for about 18 months now, but over the last 6 months or so, I've noticed a progressive eye sensitivity issue. I've never worn glasses until now (just reading glasses so far), but when certain lights are on, or even the opposite-if the room is darker, or when the sun is bright-I instantly get this pain like behind my eyeballs, and lasts for about 30 minutes until my eyes adjust. Any one else experience this??
Hi Mel. I was originally diagnosed with gbs and then cidp,, MADSAM variant. I get light sensitivity too. During the past 5 years it comes and goes. It isn't a big problem. I avoid looking into light and wear sunglasses when I am outside. I have to be careful driving in rural areas when people have their brights on. There are times when my eyes don't dilate and times they stay dilated. I have asked the doctors to use the low light when they do an examination because the regular one does hurt. I get tracking issues, when I read sometimes too. The good news is that it hasn't gotten any worse in all that time. I wish I knew why there are these changes even when my treatment hasn't. It is a mystery.
I agree...I wish I knew too...but the only sense I can make out of it is that with all the changes going on with our nervous system, our eyes are an organ too, and I can't help but think that the changes are affecting the brain and our optic nerves. Thanks for your reply :)
I've noticed white streaks running horizontally across my vision. I "read" (for what that is worth) that eyesight and hearing can be affected by CIDP.
Thank you...I am also beginning to wonder if this is strictly disease related, or perhaps varied by courses of treatment. For example, I've been on plasmapharesis every 10 days for 18 months now, and I'm just wondering if my vision and optic pain is perhaps a side effect of pharesis, not so much just CIDP. Any thoughts? What was, or is, your main course of treatment? Pharesis ever used?
Hi Mel,
Maybe I’m not crazy after all. I keep telling my wife that this disease I have is affecting my eyes and she says it’s just my age(61). After getting CIDP after a blood transfusion, My eyesight has gotten a lot worse. First, my eyes started burning and I still suffer from this after 16 months. Then I noticed that lights, TV, car headlights seemed brighter than normal. Then blurriness and double vision. After complaining to my eye doctor, he sent me to eye surgeon. He said I had some cataracts. So new lens were put in and he said I should see great out far but may need some cheap reading glasses. Well, it was almost the opposite. Had eyes checked and the new glasses didn’t seem very good. Still had double vision and blurry. After a few weeks, went back to eye surgeon and complained about my vision again. He tested and said I was given wrong prescription in last glasses so again got new ones. Is much better and helped my blurriness and double vision. Now, after a few months, my vision seems to be going bad again. Eyes burn, lights seem bright etc. It feels like my eyes are swelled up and the skin above my eyelids has been drooping more and more since I have gotten this crazy disease. The eye doctors don’t seem to understand or want to try to figure out if this is caused by CIDP. I really believe that something does affect the eyes or the optic nerves in some of us that have CIDP and just hope that more research can be done on this subject. Otherwise, I have responded well with only the steroid infusions and use Lyrica for the foot burning.
For the last few weeks I have been telling myself to get down to the opticians as an eye test was well overdue.
I have been experiencing a lot of eye problems including sensitivity to light, blurred vision to the point I could hardly make out the keys on my keyboard. I couldn't even read the instructions on food packets without a magnifying glass.
Well never got round to going to the opticians but today was day 5 of my 3 monthly IVIG treatments and I woke up this morning and no blurring no photosentivity and my eye sight is back to being as good as it ever was, coincidence I think not!!
I'm so glad that I didn't go to the opticians otherwise I would now be the owner of a pair of glasses (probably expensive too judging by the problems I was having) that were no use at all.
Well its about two weeks till my next apt for IVIG and my eyes have started to deteriorate again.
I am using a generic pair of reading glasses( the sort that you can buy off the rack in supermarkets) and they help if I wear them for an hour my eyes are usually a lot better for another hour without them.
Eyesight is certainly an element of CIDP but as with everything else not everyone will be affected.
waiting to see what my next infusions does