Sunday, 1 week ago, my daughter woke up and could not focus her eye, also had double and blurred vision. We brought her to the eye doctor and said the trunk of the nerves of the eye was suffering from paralysis. We visited her Doctor in Houston,Tx and he said it was just too rare for this to be CIDP. (prior to this visit, he lowered her ivig dose to try to wean her,) he admitted her, checked for aneurysm, brain tumor, and Lumber puncture for any other diseases. Not quite sure if final results are in. Still waiting.. She has received 5 doses of iv steroids. .This past Tuesday, she received her full dose of ivig. Also her neck feels somewhat stiff and shoulders and upper neck sore being very sensitive to touch. We are just not knowing if she relapsed due to change in dosage, or if it was already being triggered by something else. Anyone ever hear of this happening to someone.....
I live in an are that provides as good of care as the North Pole. Now that this is out. I was diagnosed 3 years ago. Approximately 3 years ago I also could not see out of my right eye. Everything was so blurry I could not read or see well enough to drive. This is intermittent. I won’t be able to see out of my right eye for a week and then one day I can see then the next no vision. My eye doc say it was an injury to my optic nerve 10 years ago. But beside a trillion floaters everything was fine until I became sick 5 years ago. Now I cannot see. So I’m confident we are not the only ones with vision issues.
Hi. Really sorry to read about your daughters condition although I find it interesting in that I also have double vision from time to time. When I first noticed it I mentioned it to my CIDP specialist, his response was that it was not related to the CIDP but I continue to hold a level of suspicion and your situation only confirms my suspicions. I have not had the associated feelings in the neck etc. Best wishes in your daughters journey.
Diagnosted in 93, and around 1997 I experienced blurred double vision. At the time I was receiving plasma exchange every two - four weeks. My neurologist put me on 2X per week PE and after 3 weeks the double vision cleared and has not reoccurred. I've had several relapses with the CIDP over the last 16 years, but none have triggered any vision problems. I'd be searching for a second opinion. Best wishes.
Hi kc - sorry to hear about your daughter’s vision problems. I was finally dx with CIDP a year ago but had been going downhill for many years. I also had the blurry/foggy vision getting so bad I went to get 2nd then 3rd opinions. Now I’ve also been dx with Sjögren’s syndrome which explains the eye problems, dry mouth. & occasional excruciating pain with glands in my neck. I’m on IVIG every 2 weeks & after 8 months it is finally helping my vision problems too, better at times & still bad other days. Just a thought to ask your doctors. Hoping you will find a treatment that will help. We all understand the frustration & heartache especially being your child. You want to make it all better for them. Well wishes & #ComfortingThoughts your way.
It happens to me. Every time I come out of remission/relapse it happens. That is how I know it is happening again.
I was diagnosed with CIDP in 2007. I have had various different symptoms which have varied hugely in intensity, from wheelchair-bound to reasonably mobile, but never anything affecting the eyes. My guess is that your problem is either a side-effect of treatment(s) or a very rare CIDP symptom. Has anyone offered you Rituximab as a CIDP tratment ? It certainly seems to have helped me. Good luck :0) .... Bob
I to, have eye issues. The week before my infusion my right eye lid starts drooping. Then I develop double vision. After my infusion the drooping goes away but my right eye looks like it is bulging, but the double vision goes away for a couple of weeks. Then the drooping comes back. The doctor said that is not normal for CIDP. She thought I might have Myastenia Gravis also, but all the tests came back negative. I have experimented with my diet by going gluten free and that helped, I now follow the Paleo diet and it helps with the pain in my legs, and the burning in my feet. I know that diet is not for everyone. What works for me may not work for anyone else. The diet doesn't have any effect on my eye issues, except that I am no longer getting ocular migraines. I am getting my infusion every 3 weeks, and take cell celcept. I was diagnosed over 4 years ago. It was the eye issue that sent me to my doctor, then the referral to neurologist lead to my diagnosis. She is puzzled by the eye issue as well.
bob_kinley said:sn was diagnosed with CIDP in 2007. I have had various different symptoms which have varied hugely in intensity, from wheelchair-bound to reasonably mobile, but never anything affecting the eyes. My guess is that your problem is either a side-effect of treatment(s) or a very rare CIDP symptom. Has anyone offered you Rituximab as a CIDP tratment ? It certainly seems to have helped me. Good luck :0) .... Bob
Interesting. I have occasional double vision. It mostly occurs when I get tired, which I took to mean that my eye muscles get weak. The strange thing is that it is up-down, not left-right, and occurs even when I close one eye. My eye doctor is rather puzzled, but it is not too bothersome, so I have never pushed it.
I never connected this with CIDP. I'll ask my neurologist the next time I see him.
Bill
I've never heard of this caused by CIDP since it starts at the extremities (feet, hands, arms) but it could be that I'm not too bright because I have had blurred vision for about six to eight months now, but never made that connection. Gary
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC486663/pdf/jnnpsyc00012-0078.pdf
Eye involvement. At the end you'll see reference to eye problems.
Uncle Bill said:
Interesting. I have occasional double vision. It mostly occurs when I get tired, which I took to mean that my eye muscles get weak. The strange thing is that it is up-down, not left-right, and occurs even when I close one eye. My eye doctor is rather puzzled, but it is not too bothersome, so I have never pushed it.
I never connected this with CIDP. I'll ask my neurologist the next time I see him.
Bill
Hi Bill.
Interesting as mine is also "up and down" and from your details, very similar.
SImilar symptoms and my optimologist is not familiar with CIDP, so no cigar from him. Normal vision is restored after sleeping 6-8 hours
Bill said:
Uncle Bill said:Interesting. I have occasional double vision. It mostly occurs when I get tired, which I took to mean that my eye muscles get weak. The strange thing is that it is up-down, not left-right, and occurs even when I close one eye. My eye doctor is rather puzzled, but it is not too bothersome, so I have never pushed it.
I never connected this with CIDP. I'll ask my neurologist the next time I see him.
Bill
Yeah, I find that very puzzling. Most double vision is left/right, when two eyes do not work together properly. I don't really understand how you can up/down double vision, but I certainly do.
Bill said:
Hi Bill.
Interesting as mine is also "up and down" and from your details, very similar.
More eye problems!
Does anyone have clouding-up of one eye (or both)? At the end of the day, when tired and focusing on TV with my blurred vision, a thin, transparent film slowly clouds up my left eye. I go to sleep and by morning it disappears.
Optomologist says cataract, but I wonder. I've had so many incorrect diagnoses for ailments that turned out to be CIDP
I find this discussion fascinating. I have double-triple-quadruple vision in both eyes, but my situation has been complicated by a genetic cornea disease calked Fuchs Dystrophy that I’ve had for 2X as long as CIDP. I’ve had two cornea transplants, but the results were questionable. The surgeries were a success, but I still couldn’t see! My eyes focused at two different rates. I kept complaining about the astigmatism and had another procedure that still didn’t “fix” it. Only recently did I realize that the problem wasn’t with the cornea disease, but the CIDP. My eye dr. (Who ironically has TWO brothers with CIDP) didn’t think about a connection. Can’t wait to show him this thread! Thank y’all!
I have also been having vision problems. My Ophthalmologist suggested I see a Neuro-ophthalmlogist. A neuro-ophthalmologist is a doctor who specializes in visual problems that relate to the nervous system. This includes loss of sight due to injury to the brain or the optic nerves which transmits visual signals from the eyes to the brain. Such injury can be caused by trauma, inflammation, strokes, tumors, toxicities and infections.
I have had double vision with things being "up and down", letter appear to be stacked on top of themselves. This has been going on now 3 years without relief. My eye doctors said they had no clue and sent me to an optic neurologist. He said it was dry eye, so I did everything that he wanted with the ointments and drops, and still no change.
Well that is not true. Since the double vision has started my prescription has changed 5 times and I also have the issues of my vision blurring up on me. I swear my new neurologist thinks I make this stuff up.
I have been diagnosed for a short time but I have been dealing with symptoms for two years. Over the two years my prescription has fluctuated so much. Now I just wear cheaters because one week I can see with my prescription and the next I can’t and then maybe a little.