And, I too had a neuro dept head say NOT CIDP…

December 20, 2009 at 9:42 pm

because I wasn’t in a ‘wheelchair yet’! I replied that couldn’t that be because I’d gotten the IVIG BEFORE I needed the chair? HUMMMM. How and where a neuro is trained, plus whatever life experiences or research they’ve done … well, can and DO bias how they approach this all.
Skin issues are NOT at all uncommon with such neuro issues as your sensory nerves are not able to tell your autonomic ‘lymphatic’ nerve system what to do as well or clearly as before! DUH?
As for IVIG? At least you ARE going to give it a try! Good for you!!! As for being scared about getting IT? NAH! It’s essentially ‘pasteurized-processed blood product’! Far better than just getting a blood infusion. It’s going to be interesting at first? Then w/the pre-meds you mite get drowsy and just bring a note pad and write down what brand of IVIG they are giving you and make notes of the RATES they give it to you at. Too fast? and you could have one whopper of a headache that you do not need about now. Usual pre-meds range from 1-3 tyelenol plus 1-3 benedryls…. That’s why you mite be drowsy-ish afterwards….at the end of it tho? You mite also feel both sleepy and as if you’ve had 3 super-double strength cappucinos! The latter is the IG’s doing their thing I like to suppose.
Remember the odds – theres a 40-70% success rate in how you mite feel once getting IVIG? I sure hope that you are in the good numbers! Keep a good attitude during it all? BUT if at ANY time during the infusion, you feel something is ‘off’? ASK QUESTIONS AND DON’T let them ignore you! It doesn’t happen often, but if it does? It isn’t fun….so don’t let the ‘off-ness’ go.
BTW? It’s interesting the first few infusions? Then it’s downright boring. Bring sources of amusement for the ‘duration’. I now have infusions at home, and it’s great, as I can simply nap at will [from the benedryl] afterwards.
IT IS WORTH TRYING! I’m pulling for you.