Don’t have answers, but going to find out for myself!

January 10, 2011 at 6:11 pm


I don’t have the answers to your questions, but I decided to go for SCT after talking to several individuals (with CIDP) that had the Dr. Burt procedure and each and every one says they would do it all over again because they feel it stopped the progress of the CIDP and also they gained back a lot of their lost functionality.

I’ve been on IVIG for over 2 years and was doing great, then suddenly everything went wrong and I was worse (nerve conduction) than when I was diagnosed. We increased the amount and the frequency of the IVIG – I now go every Friday – but it feels as if the CIDP is still winning. I am also on Imuran since I need to fail 2 protocols to be considered for the SCT, but it’s not helping. The only protocols left for me to try are plasmapheresis and/or chemo. Since chemo is part of the SCT protocol and to harvest the stem cells is similar to what is done through plasmapheresis, I decided why not just “git ‘er done” and get cured! (OK – for those that have trouble with the “c” word, get the CIDP into long, long, long term remission).

Again – everyone I’ve talked to says, unequivocally, they would do it again in a heartbeat – that they now have hope and a future. I want that! My evaluation at Northwestern is next week – I will know by 1/21 if I’m accepted!

I’m tired of being sick, so I guess I am impatient also! So be it!!!! SCT, here I come (fingers crossed!!!)!