Reply To: rituxin for people WITHOUT the anti-mag type neuropathy

May 12, 2012 at 10:37 pm

PattyO–sorry to hear of your pain. I am fortunate to not have any pain, as i understand nerve pain can be unbearable. I did have a PET scan last june at mayo, no tumors were detected then. I feel as though my cidp is not being treated aggressively due to the possibility of an underlying cancer—but my point is right now it’s not cancer i’m concerned about it’s the damn cidp. Yes i have read that the cidp can prelude the cancer by up to 5 years–but I’ve also read there may never even be a cancer, just the antibody. It’s so confusing, i wish there was more medical knowledge on this whole thing. I am way more concerned with the quality not quantity of my life. i would much rather have 5 good years with full use of my legs than 20 without them. Oh well iI have come this far, just a few more tests and i SHOULD be able to start the rituxin—-im hoping by the end of May, seems like it’s taking forever to get going.
Have you been checked for the small cell lung cancer. there are many antibodies that signify the possibility of different cancers. some antibodies mean there will definitely be a cancer, some mean there might possibly be one in the future—this is what mine is (VGKC) do you have a particular antibody specified? the good thing is the antibody DOES show that the nerve damage is coming from the immune system, so at least with it one knows it’s immune related, If thats’ any consolation.
yes i do see what you mean about hoping for a tumor–because removal and treatment of it will stop the immune process and possibly the nerves could then start to regenerate and heal—–so the hope would be to find a cureable tumor!!.
Challenge your insurance company and use the appeal process–i did this to get my pet scan covered. i went to the second level appeal and it got covered. my insurance is anthem bcbs. if your interested and want more info on it let me know. once again sorry for your pain–i hope things get better for you . Lori