• Anonymous
      November 18, 2009 at 7:28 pm

      not sure what doctor is looking for i guess just to see if the CIDP is affecting my brain, anyone else have this happen to them????I go tomorrow for the results. I am really scared if it has gone up to my brain what does t hat mean???

    • Anonymous
      November 18, 2009 at 8:22 pm

      Don’t worry to much about it. Ryan has had several MRI’s done I think its pretty routine that they check it to make sure there’s not any other problems. Hang in there.

    • Anonymous
      November 18, 2009 at 8:28 pm

      CIDP traditionally does not travel the Central Nervous System (The brain and spinal cord) MS does. Maybe doc is trying to rule out MS or something else.

    • Anonymous
      November 18, 2009 at 8:28 pm

      What he is testing for are the following things… possible spinal damage due to some fall or accident, particularly around the head and neck, but if they check out the spine? Even better! Second they are looking for ‘white spots’ on the brain….these can be caused by concussions [that’s what’s happened in my case] or bigger spots for either MS or Tumors [all of which are NOT bad cancers at all]. The radiographer even asked me about a ‘spot on my brain’? It was from a very bad concussion over 15 years before taking the test! It did take me a couple of minutes to ‘replay’ my entire life to remember that one! But when I told them about it? I got a [B]OK[/B] and it’s not been a problem since.
      This is a good web site as intro to what all a neuro looks at for everything before deciding WHICH of many neuro conditions is the most likely –
      [url url]There are hundreds and more neuro conditions and the testing is a process of elimination.
      I’ll bet that if the results were bad to horrid? He/she’d have asked someone to come along with you.
      During my diagnosing phases, I had BOTH MRI’s and CT’s, each with and without contrast. They’re interesting at first? After that, for me? Just very COLD and boring!
      This is just one more step in the process of elimination of possible ‘other things’ that are checked off the ‘list’ for diagnosis. Keep at it. And keep faith!

    • Anonymous
      November 18, 2009 at 9:32 pm

      He is probably checking for lesions on your brain or spinal cord. My doc has me do them at least every 6 months or so . The lesions would show MS or perhaps Transverse Myelitis ….. Both of them have many similair symptoms as CIDP does. So he probably wants to rule them out . I have CIDP and Transverse Myelitis so its possible to have both but they are treated differently. Try not to worry because he is probably just ruling the possibility out for you so he knows how to treat you properly 🙂
      Good luck … Keep us updated !


    • Anonymous
      November 19, 2009 at 11:20 am

      And don’t worry too much if they find brain lesions. A number of us have lesions without having other disorders. Whether the lesions are associated with the CIDP, who knows.


    • November 19, 2009 at 11:22 pm

      Yes I did have an MRI on my brain and spinal cord. It helped them diagnosis my CIDP. I have increased neuropathy in my extremities. I also had and EMG. I’m so blessed to have good insurance because the MRI was very expensive. Sometimes I wonder though if the are just trying to make money.
      I asked for a copy of my results because the neurologist just generalized it and didn’t go into detail with me. Don’t be scared. I figure for myself since I had to wait several weeks for the report it wasn’t serious.

    • Anonymous
      November 20, 2009 at 1:33 am

      yeah nothing to worry about. I had a demyelinating lesion in my cervical region. turned out to be nothing I guess. At least once they ruled out MS they acted like it was. when I used to post on “this is MS” before I had any idea what was going on, they said that lesions can appear for many reasons. MS is one but also sjogren’s which has been mistaken for ms in some and TM which is mentioned above. And yes not typically but they have been reported in CIDP. I still have not been diagnosed with anything (accept gbs twice) so I cant correlate my lesion to any of the above. but like I said, even if they do find a lesion it could still be not so serious. whatever caused mine went into remission for 5 years 6 months afterwards that MRI.

    • Anonymous
      November 21, 2009 at 5:45 pm

      everything was clear. going for ivig soon passed th kidny stone.

    • Anonymous
      November 21, 2009 at 5:58 pm

      [COLOR=”Navy”]What I find particularly interesting about this thread is that folks speak of the results of MRIs and getting print-outs, etc. My neuro had me do an MRI, head to toe, took 3 hours ( I used the noises as a mantra of sorts ). She gave me the actual films as well as the reports on them. Copies, I’m sure, but I have them in my possession and I did not have to ask for them.

      My neuro did her neuro training at Johns-Hopkins.

      She did not hesitate one millisecond in requesting that I see her “guru” in Houston for a second opinion.

      I’m not about to lose this woman![/COLOR]

    • Anonymous
      November 24, 2009 at 11:15 am


      There was a small UK study in 1990 that showed 14 of 28 CIDP patients had brain lesions of some sort. Only 6 of them showed symptoms of CNS issues.

      A similar study in Japan in 2007 showed similar results. Of the 18 CIDP patients, 5 had abnormal MRIs and another had CNS issues found through a different method. (I read the whole paper, but I’m not a medical doctor, and couldn’t quite decide what fraction of the 5 with abnormal had CNS-related symptoms.)

      Anyway, having an MRI that shows lesions (aka “white spots”) doesn’t seem to be unusual for CIDP patients and doesn’t necessarily mean much.

      Cheers, hughwilliams.

      Here are URLs for the abstracts:



      (you need to try a library at a college or similar to get the whole paper.)

    • Anonymous
      November 24, 2009 at 8:01 pm

      I’ve had MRI’s of my brain and spine.

      I think its pretty standard protocall to assess for things like MS, and stroke.

      Once they rule out the CNS, then they can safely say that its a PNS problem.
      (but, there are the very, rare persons with CIDP with CNS involvement)

      CIDP is less common than MS.. so when they hear certain sx’s they think “horse’s, not zebra’s”.
      (Esp. in females, which MS is more predominant)