Are My Nerves Regenerating?

    • Anonymous
      August 30, 2009 at 12:34 am

      Greetings:

      I haven’t been active on the forum lately; things had been relatively stable for awhile, so I was focussing on other things than myself for a change! 🙂 About a year ago, I started on methotrextate for my sensory CIDP, along with my regular monthly IVIg and usual pain meds (neurontin, tramadol, oxycontin). I am due for my IVIg next week.

      As far as my neuropathy goes, I have no reflexes in my feet, and virtually no feeling in my toes and sole of my feet, altered sensation up until my knees approximately, reduced sensation in my hands and forearms. I have quite a painful neuropathy, hence the pain meds. I also have the usual fatigue, lack of balance, difficulty doing small motor actions, etc.

      I have a question for you all, though — for the last few days, I have been having huge buzzing and electrical zapping up and down my legs and feet.
      This new feeling is quite unlike anything I have felt before. Therefore my question — do you think that this might be my nerves regenerating?

      The feeling is overriding my usual sensations, to a certain extent. I had a look on the forums and other sources, and I didn’t see anything. So, I am hoping that some of you may have had some experience with this!

      Thanks alot, everyone — keen to hear any feedback.

    • Anonymous
      August 30, 2009 at 4:54 am

      Hi Debs,
      Glad you have been stable for a while. I have sensory CIDP too and have had/have the symptoms you describe – including the electrical buzzing/zapping! Except I’ve had it for ages – usually though, after I have been overdoing things. I have it at the moment actually, as the result of going shopping a couple of days ago with my daughter and her two ‘very busy’ (but delightful) children. I did way too much physically (walking, picking up my granddaughter) so I am paying for it now!
      My Doctor explained the electrical zaps/sensations as ‘distorted pain’ signals.
      I’m also getting icy spots on my legs and face at the moment too – wierd huh?
      I hope your sensations settle down soon.
      Kazza

    • Anonymous
      August 30, 2009 at 8:26 am

      i have had what you describe. over the past year, i have steadily improved with the use of the evil prednisone. over the long months, i experienced sensation return, from the inside out– meaning, hips 1st, then thighs, then calves, now ankles and feet are slowly improving too. in fact, for the 1st time in 1.5 years, i have small reflexes in my legs and arms.

      i asked my old neuro the same question you asked here. his answer was that yes, those zingers may very well be related to healing, repairing… i personally believe this to be true as i have only improved and i would notice bigger spurts of improvement following an episode of zingers. boy can they get your attention huh?

      but be careful not to confuse over-exertion zingers with healing zingers. think of a scab on you knee. each time you bend your leg, it tugs and pulls at the scab and you feel pain and tightness, maybe even itchiness. i think our healing nerves are similar. anyway, that’s my 2 cents 😉

    • Anonymous
      August 30, 2009 at 9:32 am

      Hi Debs,

      I’ve been on IVIG since last Nov and until recently it felt to me as if the #1 benefit was the energy I get from the treatments … but the numbness continued creeping up my legs and arms. I was concerned and thought maybe I should be getting something more than pain control and IVIG. I discussed my concern with my doctor and then asked him to treat me as if I was a member of his family (he said I was the first patient to ask him that and it was a very good question!). So he told me he didn’t want to do the other things (low dose chemo, steroids) until we give the IVIG more time as the side effects from those other treatments could cause other issues. So I trusted him … and with the July treatment came a serious increase in those buzzing/zapping sensations … and I got some feeling back in my lower legs!! But Alice is right, we still have to sort through the I over did it zingers and the feeling is coming back zingers … but I’m finally getting some feeling back!!!:)

      I’m really excited about this and so I wish you more zingers and more feeling!!!!!!!:D

    • Anonymous
      August 30, 2009 at 11:41 am

      Hi Debs:
      Good to hear you are healing… I too had the buzzing and zapping, especially on top of my thighs.. I think for me, it was the nerves reconnecting… Best of luck and wishes…

    • Anonymous
      August 30, 2009 at 2:59 pm

      The newly grown nerves are trying to make ‘connections’ w/existing nerves.
      It is vey hard to find much of any research about this all tho. Most work seems to be on all the whys, ins and outs of the nerves dying.

      ‘Zapping’ is the perfect word for it all! So it’s best to think of it as an incomplete complicated electrical circuit. I have found that when I have those [rather than the being under high tension line ‘thrums’] they usually last no more than about five minutes each. That is quite enough at the time tho.

      Keep up doing things that seem to be working! As long as you can feel anything? It’s a good thing.

    • Anonymous
      September 1, 2009 at 10:12 pm

      Debs,

      You have things in your body called Schwann cells. They constantly rebuild myelin around damaged axons. Your immune system is battling to tear it down. The battle wages on and on.

      My GP told me that diabetic neuropathy patients feel tingling as their neuropathy abates. Maybe that is where the comments come from. If you felt the tingling, and then had an associated recovery…

      I think the tingling sensations could be either. I associate the sharp shooters to be a result of misinterpreted signal, or damage to the nerve pathway

      Good luck

    • Anonymous
      September 2, 2009 at 12:03 am

      [SIZE=”4″]Yes, they are firing. But don’t mistake firing for a flair up! That’s happened to me. Learn your body & its signs. [/SIZE]