Today I found out that I have been approved thru my insurance company for a stem cell transplant at Northwestern University! I was accepted into the program Dec 6th and just waiting to hear from the insurance company! Today is an exciting day for me, needless to say! I anticipate going to Chicago for the 3 month program probably some time in February/March. To have the hope that this transplant with "re-boot" my immune system to "forget" that I have CIDP and be able to live a normal life again is lighting my heart!
I have strong faith, and the Lord has opened up all these doors for me and I know He will be with me thru it all! If you have any questions, please feel free to ask. I don't get on here too much, but you can e mail me @ ■■■■■■■■■■■■■■■■■■■■ .
Good Luck Wendy, I am awaiting my first round of treatment once I get an official Dx. I hope the treatments work, but if they don't, I am so looking forward to participating in research studies such as this one. Love and Light,
Thanks tchrgirl! I'm on FB more than here so if you don't hear much from me here try there. I am starting my pre-testing there on March 19th! Do your research and get educated about it, I think it will be where we all will be heading for treatment in the near future!
I am so excited to tell you that at 9 weeks post transplant, I am feeling almost as good as I did prior to my CIDP diagnosis (Dec '10)!! I no longer have twitches, tingles, pokes, zaps, stabs or any other weird feelings I had prior to SCT. Even though I felt better with IVIg and prednisone, there was always the "bell curve" between IVIg treatments and prednisone issues! All I knew was that I didn't want to be getting IVIg every 3 weeks or so for the rest of my life!
I'm just thrilled by how I am feeling now compared to before the transplant. I highly recommend having this done before you get very bad from CIDP if at all possible. That being said; if you are already bad (nerve damage; axon damage) then try to go for it even faster!! Many have had repaired nerve damage and even major damage has improved up to 2 + years later!
You tube has many videos by Dr Richard K. Burt that are mostly about MS but he also mentions CIDP and other autoimmune diseases that SCT have worked on...type his name in the search box, watch the video that pops up and then look to the right side where you should find more videos with him and find the one that is titled MSRA Public (3 part video) - super interesting!! If you are part of Facebook, there are many different CIDP groups to join and get wonderful information and support as well. "CIDP and Stem Cell Transplant" is one that has a plethora of info in their "SCT Documents" section. Feel free to friend me too "Wendy (Jones Davis) Nash".