remylinating or demylinating???

    • October 19, 2010 at 9:08 pm

      a few days after my ivig treatments i get a lot of tingling in my feet/ankles (which are the areas damaged from cidp.) How can you tell if the tingling is the nerves getting better or worse when the strength seems to be the same? does anyone else get these sensations after ivig treatments? Lori

    • Anonymous
      October 19, 2010 at 9:22 pm

      I get the same symptoms. Sometimes it almost seems as if the Gamunex causes a slight flare-up of my CIDP as I also get burning and stinging, especially in my lower legs and feet. My neurologist told me previously that increased pain isn’t necessarily bad, as it can indicate increased nerve function due to myelin regeneration. In fact, I had an EMG last Friday which confirmed that my nerve function was improved since my last EMG in February. What a disease! It’s painful when it’s getting worse and painful when it’s getting better. My neurologist tells me that numbness, not pain, is the more serious indicator of nerve damage.

    • Anonymous
      October 19, 2010 at 10:04 pm

      [QUOTE=Lori222]a few days after my ivig treatments i get a lot of tingling in my feet/ankles (which are the areas damaged from cidp.) How can you tell if the tingling is the nerves getting better or worse when the strength seems to be the same? does anyone else get these sensations after ivig treatments? Lori[/QUOTE]

      I have these sxs all the time, not necessarily related to a treatment. The only way to tell the difference for sure, is my EMG/NCV.

      However if one has been on an upward trend of getting better (getting function back, etc.) then it’s likely remyelination.

      The symptom of “tingling” doesn’t indicate what is happening to the nerve, just that there is nerve activity going on.

    • October 20, 2010 at 9:27 pm

      thank you–glad to hear these tingling sensations are normal : ) i prefer the feeling of tingling and even pain over the numbness. the prednisone increased the numbness and weakness–so these feeling from the ivig are much better. nice to know –the info in your post about the numbness was interesting–i didnt realize that was a good way of measuring things with this strange unpredictable disease, Lori

    • Anonymous
      October 21, 2010 at 12:16 pm

      [QUOTE=Lori222]thank you–glad to hear these tingling sensations are normal : ) i prefer the feeling of tingling and even pain over the numbness. the prednisone increased the numbness and weakness–so these feeling from the ivig are much better. nice to know –the info in your post about the numbness was interesting–i didnt realize that was a good way of measuring things with this strange unpredictable disease, Lori[/QUOTE]

      Hi Lori,
      I don’t know that it’s so much a “good” way to measure to things, as it is in combination with other sxs, or lack of sxs, a pretty good indicator.
      For instance, if you (or anyone) is completely numb, then likely there is no (or very little) nerve activity going on at that time. My function started to come back after I was numb and went to a mild then more serious amount of tingling/pain as I got more function back.

      They are ‘normal’ sensations in the healing process though. What matters the most – in combination with your sxs, is are you overall getting better (more function, possibly less fatigue, more movement/sensation) rather than looking at it as de-myleinating or re-myelinating. HTH 🙂

    • October 21, 2010 at 8:04 pm

      yes–thanks, that makes sense–on the prednisone i had more numbness, walking was more tiring than usual and i was not doing as much physically as i was prior. since weaning off and having the ivig the numbness has decreased,more energy, and a lot of twitching and tingling in the nerves. I also recently started having accupuncture and get a lot of tingling after this as well.—- then on the other hand i sometimes get the tingling after exercising???So i guess if the tingling is going along with feeling good then its a good thing–but if its combined with fatigue etc then probably not so good??? Lori