Pain vs. No Pain Vis a Vis Axonal Nerve Damage?

    • Anonymous
      May 4, 2009 at 8:35 pm

      Does anyone know about this? Does pain involvement in the condition indicate any level of axonal nerve damage over not having much pain? I know some, very unfortunately, have a lot of pain, whereas I have very little. I have a lot of tingling and some numbness at this point. I’m wondering if it might mean I have less axonal nerve damage or maybe it’s the opposite and because I’m not feeling pain maybe my damage is worse. Or, is there no known correlation to make a determination like that? Thanks if you have any knowledgeable input.

    • Anonymous
      May 4, 2009 at 10:20 pm

      I can’t wait to see responses to this. My daughter is 2 and she has something half way between GBS and CIDP I guess. She complains of pain in her feet and back which could be nerves or arthritis. If it is her nerves and that is where the pain is coming from, is that good or bad that she has pain. How or why does axonal or permanent damage occur? I keep asking these questions to my neuro and I can’t get a technical answer.Does damage happen because you don’t get tx such as ivig or too much time between tx’s or is it due to the severity of the disease and therefor the luck of the draw? thanks guys

    • Anonymous
      May 4, 2009 at 10:50 pm

      I would also like to know the answer to this question — does anyone out there know??

    • Anonymous
      May 5, 2009 at 8:04 am

      Although my Dr has never said I have axonal damage, I DID read it in my medical notes on the EMG results. Evidence of axonal damage.

      I am one of the lucky ones in a sense. I normally do not have nerve pain. I’m pretty much beyond the tingling and am now just numb or have no feeling in my feet. I have severe sensory loss in my feet and hands now creeping to my elbows and knees. I cant move my toes and cannot walk on my heels or toes…cannot jump or hop.

      I have aches in my legs and hands and that’s about it. I went thru an unexplained spell of SEVERE buring in my hands that was worse than any pain I can decribe. Felt like my hands were literally on fire. The dr did another EMG to rule out carpal tunnel and told me no evidence of that but that I was in “active disease”. Mine started somewhere in 2006 and has been “active” ever since. I now walk with a cane and for those of you following me and my cane issues…I BROUGHT IT TO WORK TODAY ! Vanity out the window, I needed it. :rolleyes:

      I’m interested to see others responses.

      take care,

    • Anonymous
      May 5, 2009 at 8:09 am

      I know when I first developed neuropathy all I was getting was a bunch of numbness and tingling. The first NCV they did on me back in the late 80’s only showed sensory neuropathy. Then I kept complainiing because I was having trouble walking and felt so darn weak. They did another NCV and found Motor and Sensory with Axonal Degeneration. I think Asemetric too! Then they called it Chronic Demylinatining Axonal Motor Sensory Neuropathy. I never back then suffered pain. Just had that numbness and tingling and weakness that drove me insane. I kept feeling like I was having strokes too. Mini strokes. And later on in an MRI I did show a Cerebral Infarct. And later did go into CNS Lupus that almost killed me.
      I did not start getting nasty pain until last year after I had spine surgery and I don’t know what the heck happened to me then. But my body went on fire. My feet and hands burned something aweful! That is when I went into full blown CIDP and got diagnosed in October.
      GBS patients get instant pain when they first get GBS and some keep pain even after healing or some never heal completely. Some keep pain and it never goes away while others see the pain finally ease up. CIDP on the other hand when there is alot of pain it normally means the condition could be progressing causing more nerve damage.
      I know in my case when I start getting that burning pain and numbness and tingling, I know my body is getting demylination again. More nerve dying off!
      Hope this helped some! Ohh! the doctors too have a scale they go by. They call it Mild or Chronic or Severe! Sometimes they call it Severe Chronic. Mild usually they do a wait and see issue! Chronic at times they still have to wait and see while they are trying to diagnose the cause!
      Linda H

    • Anonymous
      May 5, 2009 at 8:38 am

      The only places I get pain are where there was axonal damage… that is rare but still happens… otherwise it’s numbness and/or tingling.

    • Anonymous
      May 5, 2009 at 1:30 pm

      I think the answer might be buried in this information somewhere, or at least something to indicate probability one way or the other.


      It’s something for my little mind to digest on another day when it isn’t so tired.;)