Newly dx’d CIDP help?

    • Anonymous
      May 30, 2008 at 11:01 pm

      Hi, I’m in Louisiana and I had and episode last year where my legs just suddenly became paralyzed…long story short, it happened again this year! DX= CIDP. My lumbar punctar showed elevated protein.
      I had one bag of iv ig….nothing happened. The only thing that ties the two episodes together is a neurogenic bladder and a bad bladder infection. I have a supra pubic catheter now. I have neuropathy that is also affecting my face on one side as I type this. Problem? My neuro has decided that since the ONE bag of IVIG did nothing…I should go for a second opinion. Sigh…due to the lack of docs here now, I have to go over 100 miles away, I don’t drive, and it’s a hardship. My GP’s notes say that I “called the office almost daily complaining of pain”. …He’s the one that called me today frantic to start me on another antibiotic to “keep me out of the hospital” because I have 50k wbc in my urine and blook plus more.
      Sorry for the rant, just don’t know what to do..I’m going for the 2nd opinion, just afraid …very afraid now.

    • May 31, 2008 at 8:40 am

      Hi, welcome,
      What do you mean by one bag? For a first treatment, otherwise known as a loading dose, you should be getting 2g/kg which usually is given over 4-5 days for several hours each day. One bag would be like taking a 1/16 of a tylenol for a tooth ache. For instance, my 11 y/o weighs 117lbs and gets 90 grams total ( a little under 2g, but we have been on it for a while) A second opinion would be a good idea if your doc does not know the standard protocol for ivig. Although it is rare, and some docs never see a case, there is the internet for him to reference or have the courtesy to suggest you seek out a doc w/more experience. My sons bowels, bladder, lungs and extremities were affected. After the 5 day course, he was able to run down the hosp. halls and urinate properly. The bowel issues did take about 3 months to get completely back to normal.
      The 100 mile drive would be worth it. Or perhaps you could travel to Mayo and then your doc near you could confer w/ the Mayo docs once they have made their dx and established a treatment plan. good luck to you!
      Dawn Kevies mom