Just found out

    • Anonymous
      January 16, 2008 at 10:44 am

      I found out last week, I have cidp after having emg & ncv test. I have been a tree trimmer all my life I always used climbing spikes an ropes an saddle .I began noticing I couldn’t drive my spikes in as easy as as I always could.My calves somedays hurt really bad an I noticed once I got on the ground ,which

      seemed to be alot more often then I was used to I had a hard time getting up.
      Anyway I go to see the neurologist next week. What can I expect? Thanks for any help.

    • January 16, 2008 at 11:49 am

      since you have already had the ncv/emg, I am assuming the dx has been made. An l/p also could be done if there is doubt, but there is not always an elevated protein level. In any event, the dr. will discuss treatment options. The first line of defense is a 2g/kg loading dose of ivig over a 3-5 day period. The longer the infusion, the smoother it goes. The slower the flo rate, the better. Some docs go right to steroids because of cost and insurance, but ivig is usually first in the protocol line up. You would probably do loading doses 1-2 times and then start a maint. schedule. My son has spectacular results w/ivig, others need ivig in conjunction with steroids. Your doc will figure out what would be best for you, everyone and their circumstances are different. Good luck to you and return to this sight often, there are so many kind, knowledgeable people here, I have learned so much from them. They have helped us so many times both with medical advice and personal encouragement. The people on the sight have kept me strong every time I have to go to bat for my son. That is something you can expect, going to bat for yourself, because the docs do not always know.

      Best wishes,
      Dawn Kevies mom

    • Anonymous
      January 16, 2008 at 12:04 pm

      [QUOTE=Willie]I found out last week, I have cidp after having emg & ncv test…Anyway I go to see the neurologist next week. What can I expect? Thanks for any help.[/QUOTE]

      Welcome to the forum. As Dawn Kevies Mom says, this forum can be really helpful. I have only been here for a few months and have learned far more than any of the doctors have shared.
      Suggestions for next week are to get all your questions lined up. I even wrote mine out and presented them to the staff, and the doctor answered them all.
      You may have to go through a bunch of blood tests too because there are several variants of CIDP and presumably your neurologist/hematologist will want to be absolutely sure of the root cause, especially with the high cost of some of the targeted medications.
      Good luck

    • Anonymous
      January 16, 2008 at 8:03 pm

      Thanks for the help, I will definitely have some question prepared I will let you know what happens.