Hi, Linda.

By definition, CIDP is only supposed to affect the peripheral nerves. But I’m one of those with CIDP with an unexplained vision problems and brain lesions. My neuro’s put me through the entire regime of tests with no idea of what’s going on besides CIDP. She just shrugs and says she hasn’t got a clue.

Not very helpful, but there it is.

Best wishes in the battle,

Deb
London

Hi Linda,
I have CIDP and have cranial nerve involvement. Not the optic nerve though. My problem is more to do with eye movements. Also, my trigeminal nerve is affected and I have bouts of trigeminal neuralgia. My taste for salty and sour has just about gone as well – luckily not for sweet foods though!
There are some good articles on the net regarding CIDP with cranial nerve involvement.
Good luck,
Kazza

Hi there, I had inflammation of my 7th cranial nerve. I didn’t have any symptoms though, but it did show up on an MRI. I am starting to wonder if, with CIDP, the norm is not the norm.

Hi Linda,
I’ve had cranial nerve involvement the whole time but about a year ago the optic nerve in my right eye was inflammed – it got better after about 6 months though and I haven’t had any trouble with it since then. The rest of my cranial nerves on the other hand… :rolleyes:

Julie

My doctor says it is unusual but not unheard of to have cranial nerve involvement. My cranial nerves were attacked in the initial assault and haven’t improved much over the last two year or so, my ability to chew has not improved AT ALL. However, my cranial nerves seem to come and go – I’ll have three or four months of attacks/problems and then everything will calm down for awhile and I won’t have as many problems. My doctor also says IVIg typically doesn’t help cranial or autonomic nerve involvement – I was just thinking I’d switch over to Cellcept when I saw that article – OUCH! No thanks…

feel free to PM me if you want more details… 🙂

I also had problems with the cranial nerves. I had double vision, and my eyes were slow to dialate and constrict and weren’t equal for awhile. Again it was attributed to CIDP. They have improved over time but I did develop cataracts from the high dose sterdoids that I was on. I just had surgery on Monday and now feel like I live in the land of “OZ” as everything is so bright and clear!
Linda you said you had cataract surgery as a teen, could it be that causing issues again? I know you can develop secondary cataracts on the replacement lens which can easily be removed with a laser. I hope they find an answer for your issues. Take Care,

Emily had cranial nerve involvement. I can’t remember which ones were affected anymore though. Her right eye became paralyzed. She could not move it to the right at all. It was stuck in the left corner of her eye.

MASSIVE amounts of IVIG helped take care of it. You can’t even tell there was ever a problem now. I believe that IVIG did help with her cranial nerves because the MRI prior to IVIG showed inflammation & the MRI 11 months after first IVIG treatment showed no cranial nerve inflammation. The eye would still relapse & become paralyzed again without IVIG.

Dr’s say that CIDP doesn’t affect the optic nerve but I think it can & it does in VERY rare instances. The fact is that each CIDP’er varies so much that it’s hard to get a real idea of everything that can be affected. It also doesn’t help that there isn’t much research being done on it specifically.

Kelly

Shucks, cataracts would be easier to cure! Keep us posted on the testing. Its amazing to me of what they can test. I hope they can find the cause and treatment for you. It is frustrating not to be able to see clearly. Take Care,

Eshenry welcome to our family. The onset of CIDP bears no relationship to the outcome. Cranial nerve involvement is not common but is recognised by neurologists to a varying extent of between 5 and 30% of CIDP patients (New England Journal of Medicine March 2005). It responds to treatment in a similar manner to the peripheral neuropathy. From your description you had involvement of cranial nerves V, VII, VIII, X, XI, & XII. I hope your improvement continues. DocDavid

i have had the same symptoms but mine did start in the legs. not sure still get vertigo if i am too tired and i get dizzy just sitting at the computer. I was trying to get my ivig here in my home town of course they are not a ppo so they do not want to do this expensive treatment. and I have talked to three differnt doctors and facilitys they are very stand offish even my ppo because of the cost.. WHY do I have GOOD insurance the have approved it and the people still dont want to treat me and the same excuse the cost well that dont hold water i have paid all my doctor bills and family doctor bills up to date with no lateness and they act like i will not pay them. i thought that they hads to treat everyone, and that patient care should come first……

My daughter who is 5 years old was dx’d at 4 years old with CIDP. She had cranial nerve involvment. I can’t remember which ones were affected though…I’m sure 6 was but can’t remember the other one now.

She had a repeat MRI nearly 1 year after her original dx & her cranial nerves are no longer inflammed. She has right eye paralysis when not on high doses of IVIG. Her right eye turns into the left & cannot move to the right at all. It’s slowly getting better though.

It’s rare but it can get better.