Question about relapse

    • Anonymous
      November 15, 2007 at 4:19 pm

      Hi All, This will sound pretty dumb, but just how does a relapse affect a person, does the pain get worse or does it move up the body again?
      I have remained the same, no good from the knees down, and several numb fingers since Nov. 05. My nerves are very damaged from waiting so long to see a Dr. before dx in May 05. I have been getting my IVIG about every 2 to 3 months while shopping for a Neuro who knows CIDP. I am curious about what could happen. Told you it sounds dumb::o Regina

    • November 15, 2007 at 6:19 pm

      If you are getting weaker, you must need more ivig, or closer together. It does not seem like your current maintanece plan is working. I would say a new neuro is in order.

    • Anonymous
      November 15, 2007 at 11:49 pm

      You did not say in your post that you are getting any weaker, so I would not say that you are relapsing. If you notice more weakness in muscle function, such as not being able to physically do something one day that you could do yesterday,that could signal a slow relapse. For me a relapse meant waking up & no longer being able to lift my arms, or maybe no use of my legs at all, even lateral movement.

      As far as pain, I think when my pain is worse it means I have done too much one day, or maybe bent down wrong, pulled a muscle, or walked too much. Tonight I am cramping up a lot from overdoing it the last 3 days. A lot of it is in learning your limits & sticking to it, something I myself, am not very good at. But I prefer to live as much as I can, & to the fullest. I will take the pain, & thus I overdo it too often…

    • Anonymous
      November 17, 2007 at 12:15 am

      Ragina and Pam,
      What do you mean by pain? Where do you experience pain?

    • Anonymous
      November 17, 2007 at 11:40 am

      Hi Linda and All. Certainly appreciate all the replies. My pain could be described as pain to the touch, mostly. I guess it like the nerves are all exposed and raw. Putting shoes on really hurts, so I just wear my Birkenstocks. The nerve biopsy I had in August is still in scab stage (think that dr. did a botched job) so I dont wear my afo’s and mainly use my power chair.
      I got a call from Mayo clinic yesterday with an appointment Feb 5th, or I have a choice of Kansas City Jan 25th. I will have to choose soon. Bother are a 6 hour drive. Happy Weekend Regina

    • Anonymous
      November 17, 2007 at 11:59 am

      For some people the pain comes before a relapse & for others they don’t really experience much pain & just have the motor difficulties.

      It sound like you are experiencing pain from neuropathy. There are drugs (like Neurontin) available to help with that.

      Good luck at the dr’s appointments. To try to get in sooner you can have your regular dr call the specialists office for you. Often times they will see you earlier that way.


    • Anonymous
      November 17, 2007 at 12:03 pm

      I wish you could go to Scottsdale Mayo. Scottsdale, AZ is absolutely beautiful. If I go to Mayo…that’s where I want to go.

      Before I had my son, back in my wild days :rolleyes: , I went to AZ about three times a year.

      My husband and I want to retire there. I guess you have to like the heat tho…and now that I have CIDP, I dont know that I could handle it.

      but, I can dream about it.

      If you go to Mayo, you’d be there a few days vs one day in KC, right ?
      I’d almost rather go to Mayo if I could…

      good luck with your decision….sorry to hear you are in pain. I have yet to hear good recovery from nerve biopsy’s. My nuero didnt want to do one b/c he said there werent any surgeons here that he’d recommend and if it ever came to that, he’d send to me to Mayo.
      When I have pain, it is a very sharp ache that travels. For a second it’s on the top of my foot, then to the side, then to the toe…same kind of thing with my hands and legs. Very bizarre. Very painful but not constant. I go days without pain, sometimes weeks…then I have pain for an hour to a week.
      None of it makes sense.

      Hang in there…
      have a good weekend.

    • Anonymous
      November 25, 2007 at 6:48 am

      from mine today. it starts off with no energy, then numb, cold hands and arms, then my left hand goes useless and i cant do much with it, then it moves up the arm. knees go weak and jelly like. then the right arm wants to join in… cant crush a paper cup and then I cant hold my arms up. all within 24 hours usually.

      no real pain, just extreme exhaustion from trying to do stuff, and the complete sick feeling of “uh oh here we go again”

      btw, when sore, massages feel the best.