eye’s

My daughter’s right eye was affected. It became paralyzed pointing in towards her nose.

What type of treatment are you receiving, what dosage & at what frequency are you receiving it at?

If I were you I would insist on an MRI of your brain with contrast. It will tell if your cranial nerves have been affected. There are quite a few of them which belong to the peripheral nervous system. Inflammation on those cranial nerves could be causing the issues with your eyes & your facial muscles.

If your neurologist doesn’t want to pursue finding the answers for you then I would recommend finding a new dr. The Foundation should be able to help you find a dr familiar with CIDP in your area. If there isn’t one near you then you may need to travel a bit but I’m sure it will be worth it.

You mention light sensitivity & headaches. It sounds like you are experiencing migraines to me. You need to mention that to your dr. The dr may be able to prescribe some meds to help.

Some CIDP’ers report experiencing mental fog or trouble with their memory. My daughter used to stutter right before a relapse.

Hope I’ve helped some.
Kelly

Hi Peggy,
I have had trouble with my eyes (among other things) – mainly with the nerves that control eye movement since coming down with CIDP years ago. I have found stress, viruses and overdoing things all contribute to making me feel worst. And yes, I have the dreaded brain fog – which my doctor said was probably from the horrible fatigue that we seem to get from CIDP.
Good luck,
Kazza

Hi Peggy,
I have Horner’s Syndrome in one eye, and was told it was definitely caused by the CIDP, (it is shown in one piece of literature here at the GBS/CIDP Foundation site as stating so as well). It is an eye problem, which you can google for full details. The Horner’s Syndrome was my first symptom, and is what started the neuros on the long road to my final diagnosis two years later, after more symptoms came up.
Also, when great fatigue creeps up on me, I have double vision, and sometimes watch TV with one eye closed.
I also have light sensitivity, (it is called photophobia), which also seems to affect many people with CIDP.
My neuro. insisted that I see a neuro-ophthalmologist , which I do, and he has me see him every 6 months. They are watching for optic nerve involvement. He told me the double vision was from the CIDP.
I remember having very bad migraines in the beginning of my diagnosis, because of the light sensitivty. But, luckily, the office where my neuro. is, is a team of neuros., about 10 different neuros, each with his/her own specialty. One of them had a specialty for people dealing with migraines. And he is a very progressive doctor, as he institutes different drug trials for dealing with migraines. He attempted using NSAID drugs, (which are used for people with arthritis), and for me at that time which was years ago, he told my neuro. to prescribe Indocin for me, as he had gotten excellent results.
I am SO glad he did, as from the from then on, I have not had a migraine in many years now. I still take the Indocin 50 mg twice daily to this day, and SWEAR by the drug. I remember how horrible the migraines were, where I would have to stay in my bedroom with the blinds closed as dark as I could get it and as quiet as I could get it, dealing with what felt like my head was going to explode… I DEFINITELY do NOT miss the damn things. lol
But you can read in past posts every now and then that this pops up, how many people here have said they have light sensitivity.
I feel for you, and wish those evil migraines away from you…I remember them well, and would not even “wish them on my worst enemy”.
KEDASO
(Ken)

Hi Peggy,

I have CIDP, I have found that I cannot read for as long as I used to. I have trouble following lines, that is controlling where the eyes are looking. I’m not sure whether as a to do with CIDP or with my age. The problem is increasing as time goes on. Which is one of the reasons why I had to stop teaching.

I have also found that I have a much harder time understanding what I am reading. I read the words, but I have a harder time understanding what they mean in context. Once again, I’m not sure whether it has anything to do with CIDP or just plain old age.

Hey Peggy…When I first got diagnosed, I had several doctors tell me my eye problems weren’t related to CIDP because an MRI didn’t show that the optical nerve was involved. However, my eyes would get very bad when my other symptoms were bad. Sometimes I had double vision and other times I had to wear glasses to be able to see. Some doctors went so far as to tell me the changes in my eyes were age related. However, they’ve changed their minds about that. Right now my symptoms are under control & my vision is 20/20. Still, even though an MRI doesn’t show optical involvement, my vision is definately impacted by the CIDP. Also, all my symptoms increase with stress, a lack of sleep, cold/flu, infections, heat and/or from doing too much. When I am really having a bad bout, I can’t think my way out of a paperbag!

Peggy – CIDP is a chronic illness. That means you need to receive treatment on a regular basis. I’m sure you know that but sometimes it helps for others to remind us.

If your dr’s won’t treat your chronic illness then you need to find other dr’s who will.

Plead with your dr next week to start treatment again. Explain that you feel your symptoms are getting worse & you are trying to take care of your husband during his chemo. Tell the dr you need to make sure you are as healthy as possible. Maybe that will help convince him to treat you.

Good luck,
Kelly