Newbie with question

    • Anonymous
      June 2, 2008 at 7:16 pm


      I have had undiagnosed symptoms for 15 months. Recently I had a NCV test done with abnormal results in both my right leg and arm. Left leg was not tested as I have peronal (sp) nerve damage from a MVA years ago.

      I don’t have the final test results yet but they did find slowing of the velocity in all the nerves they tested in my leg. As well there appears to be conduction block in several nerves for my foot. I have numbness on the ball of my foot and 3 toes that has lasted over 2 months. The feeling has started to slowly come back.

      As well I have this sense of vibration that started in my right foot about 8 months ago. It now is in both feet and lower legs. This past week I have slowly felt it moving up my legs. Today I can feel it pretty much from the waist down.

      I have other symptoms as well and there does appear to be a relapse remitting pattern.

      Now for my question (sorry this is long!)

      Has anyone here ever experienced vertigo with CIDP?

    • Anonymous
      June 2, 2008 at 8:35 pm

      I think if someone was experiencing vertigo with CIDP then quite possibly they may have some cranial nerve involvement. This is just a guess on my part though – so take it for what that is worth.

      Have you had an MRI of your brain & spine?

      Good luck,

    • Anonymous
      June 2, 2008 at 9:20 pm

      Thank you for the reply. Yes, I have had 1 MRI w/o contrast on my brain only. They did find 3 very small non specific white spots right between the white and grey matter. I have also had what feels like a million blood tests LOL. All have been normal.

      My hang around symptoms that can very in severity are:

      episodic vertigo, balance issues, vibration sensation, muscle twitching and spasms, brain quakes, muscle fatige with minimal exercise and numbness.

      I should also mention that I lost the vibration sensation (tuning fork test) in my right great toe before the numbness sensation set in. It returned about 2 months later. I have a positive romberg sign as well.

    • June 2, 2008 at 10:43 pm

      It seems as though everything points to cidp, has any treatment plan been suggested? Regarding the white spots, or lesions, don’t panic, they don’t always mean what you are probably thinking. Have you been tested for ms to rule it out?

      Many on the site complain of vertigo, and balance. Good luck and keep us posted.
      Dawn Kevies Mom

    • Anonymous
      June 3, 2008 at 7:19 am

      That was the info I was looking for. I am in the process of ruling out things and no MS has not been ruled out yet. The abnormal finds on my NCV is what made me look at CIDP as well.

      As this all started out with vertigo, balance and facial spasms I thnk MS is more likely however something is definately effecting my Periphial (sp) nerves.

      I’m hoping that the results of the NCV will set off another round of testing including a spinal MRI and an LP.

      Thank you again for the replies.

    • Anonymous
      June 3, 2008 at 5:03 pm

      CIDP usually presents as symmetrical, that is, whatever is going on on one side of the body is happening on the other side. Most also have hand involvement as well as foot involvement initially, as CIDP is a disease of the peripheral nerves. It also tends to be ascending, moving up from the feet to the lower legs, moving up from the hands to the llower arms, etc. Even the relapsing/remitting form of CIDP doesn’t normally correct itself without treatments. Having said all of that, there is no “norm” for this illness, but these are some general guidelines. It does sound more like MS to me…

    • Anonymous
      June 3, 2008 at 5:10 pm

      Thanks Pam,

      Unfortunately, with the nerve damage in my right leg from the MVA….I can’t say for sure what is going on in that leg….no feeling in most of the lower leg for the last 20 years.

      I think it is more then likely MS as well. Thank you to everyone one who has offered information.

    • Anonymous
      June 4, 2008 at 9:08 am

      Keep us posted on what you find out.
      My sister was diagnosed with MS 46 years ago, at the age of 12. The treatment and prognosis is so different now than when she was first diagnosed. Our family considers ourselves experts in the area of auto-immune issues. My mother has Parkinsons and I GBS.
      All have some striking similarities.
      As you become more informed you will find dealing with whatever you have is easier.
      As Gene would have said “Take Care, Be Well”