axonal polyneuropathy w/demyelinating features

    • July 4, 2014 at 3:40 pm

      “Axonal polyneuropathy with demyelinating features” was the diagnosis of the second NCS/EMG recently done where I was referred to, and the first one performed in the spring said the same thing. I have not been back yet for the follow up visit, but I am thinking this means CIDP – I would appreciate thoughts from anyone.

    • GH
      July 4, 2014 at 5:22 pm

      CIDP is classified as a demyelating neuropathy, but can cause axonal damage as well. I am classified as CIDP, but have some axonal damage. I would think this is just a variation with more than usual axonal involvement. It only matters what you call it if the treatment is different.

      There is a lot of variation in peripheral neuropathies.

    • GH
      July 4, 2014 at 9:04 pm

      This overview shows why diagnosis of peripheral neuropathy can be difficult. There are more than 100 types.

    • August 11, 2014 at 4:01 pm

      Connie, I just saw your message. Want to share my damages are almost exclusively axonal. I am not even sure mine can be called CIDP. I have no demyelination. CIAP maybe. I respond well to ivig. However as you know axonal damage don’t recover as well. Therefore all my damages are likely permanent. The most important aspect is to establish it is autoimmune and you respond to treatment for such. In my case all my symptoms started after my gp gave me 3 vaccinations together on the same day. So it was easily established as an chronic autoimmune reaction to the vaccines.

    • August 11, 2014 at 4:28 pm

      I also read axonal damage has to do with mitochondria. Anyone can shed some light on it?

    • August 20, 2014 at 12:08 pm

      I am a post gbs patient of 20 years. I am now having shaking hands and legs. I also have restless leg syndrome. Just wondering if anyone else has these symptoms ?

    • GH
      August 20, 2014 at 8:47 pm

      MACCKAY1, it is best to start a new thread in the GBS forum for this.

    • August 30, 2014 at 10:23 pm

      MACKAY1, I have CIDP and all those symptoms you described. You are not alone.

    • September 5, 2014 at 2:22 am

      I have gone through a number of different descriptions of my condition – differential diagnosis, I suppose. My early tests showed distal de-myelination, but later tests show something quite different – slow nerves with minimal distal effect. All the genetic tests for conditions like CharcotMarieTooth are negative. So the “slow nerves” lead to an axonal diagnosis. However, for me, this is still an autoimmune disease, because I am responding to immune modulation – plasma exchange, cyclosporine and prednisone. The response is very slow – kind-a-like the nerves,I guess.

      By far the biggest effect for me has been diet. I have gone from ossobuco and steak-fries to lentils and kale. While not strictly vegan, I am about 98% there (difficult to give up butter completely – have to have a croissant with coffee every once in a while!). This has reduced inflammation dramatically.

      I actually wonder if the reduction of inflammation by diet helped resolve some of the de-myelination, and so exposed some of the deeper nerve damage which is showing up in the emg tests.

      There are so many variations in this condition, but I would encourage the change in diet. Its your life, it lasts only so long, and its a small change to make. I actually made the choice to become veggie from a moral perspective – I wasn’t going to be responsible for killing any more chickens in the short period of life that I had left. Interestingly, a few months after that choice, I started getting better. The change took about 8 weeks to settle in.


      Philip – GBS to CIDP to CMT then back to CIDP with ASMPN features over 4 years…

    • GH
      September 5, 2014 at 9:39 am

      A healthier diet is always a good thing, but there is no reason to believe that a poor diet was the cause of your neuropathy or that a better diet will promote healing of damaged nerves, other than pissibly some particular nutrients. Some people believe, for example, that vitamin B12 may promote nerve healing.

      Your rate of response to treatment depends on the nature of the nerve damage. Demyelination heals relatively quickly. Axonal damage very slowly and often incompletely.