Newly dx’d CIDP help?
AnonymousMay 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
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
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