CIDP and cranial nerves

    • Anonymous
      April 9, 2008 at 2:14 pm

      [SIZE=3][COLOR=Sienna]Does anybody with CIDP only, have cranial nerve involvement? Specifically the Optic Nerve? I had some eye tests done yesterday which showed some deterioration to the macular tissue and nerve. Aside from some pre existing conditions from the cataract removals done when I was a teenager, there is a new unexplained blurring going on in my right eye that has my doctor concerned so he wrote a letter to my Neurologist requesting a nerve conduction test be done on the Optical Nerve. I am just wondering if anyone else has any experience or knowledge of CIDP affecting cranial nerves.

    • Anonymous
      April 9, 2008 at 2:37 pm

      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,


    • Anonymous
      April 9, 2008 at 5:39 pm

      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,

    • Anonymous
      April 9, 2008 at 8:25 pm

      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.

    • Anonymous
      April 10, 2008 at 12:47 pm

      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:


    • Anonymous
      April 10, 2008 at 1:59 pm

      Can you finish that sentence? Your other cranial nerves…? Are they affected by the CIDP and how? What does your doc say?
      Thanks Deb, Kazza and Deem. It really helped to hear from you.

    • Anonymous
      April 10, 2008 at 5:34 pm

      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… 🙂

    • Anonymous
      April 11, 2008 at 9:01 am

      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,

    • Anonymous
      April 11, 2008 at 10:22 am

      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.


    • Anonymous
      April 11, 2008 at 5:54 pm

      [SIZE=3][COLOR=darkred]Thanks everyone. Jan, It is not cataracts coming back according to my doc who is the one who did my surgeries so I trust him. I talked with the Neuros NP and she is going to speak with my neuro about doing the NCT. I also found some good articles on the web. I will keep everyone posted as I think this is important information in the ever developing treatment of this condition. Thanks,[/COLOR][/SIZE]

    • Anonymous
      April 12, 2008 at 12:22 pm

      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,

    • Anonymous
      April 12, 2008 at 4:41 pm

      I know,right? Thanks. I’ll let you know. Glad yours went well.

cidp and cranial nerves

    • Anonymous
      May 1, 2007 at 9:40 pm

      I have been diagnosed with CIPD. It began in my cranial nerves, the first attack being last year (January). I had profound right facial paralysis, facial numbness, dysphagia, vertigo, heart rate and B/p fluctuations. I regained most function with some weakness, vertigo and trigeminal neuralgia, and hearing distortion. It returned and was treated earlier but I have now weakness in my right arm.
      I know you don’t have the ability to see the future. I would like to know if CIDP presenting in the cranial nerves first indicates a remitting and relapsing course or the progressive course. Can you give me some “what to expect” and what to watch for. I learned my onset symptoms quickly.

    • Anonymous
      May 2, 2007 at 4:24 am

      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

    • Anonymous
      May 2, 2007 at 3:00 pm

      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……

    • Anonymous
      May 2, 2007 at 9:13 pm

      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.