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

May 12, 2012 at 3:24 am

I have CIDP – “atypical” and very, very painful nerve pain in hands and feet/shooting up to my legs. Low positivie GAD 65/SPS positive. Apparently this combo plus persistant low white blood count and other varients in my blood work, including a recent “spike” in something (can’t remember, but it did show a bone marrow something or other; I haven’t yet had the blood test that show the cancer levels – the one they use for prostrate cancer). From what i understand, all these put me at high risk for cancer. Unfortunately, I have only had insurance approvals for CAT scans and chest X rays (not a PET scan, which is the golden standard to find a tumor). Have not yet found a tumor. From what I have read in the various research and forum entranies, it can take anywhere from 18 months to 26 months (and a most recent report I read said 5 years post CIDP diagnosis) to find the tumor. I have just gotten my scooter, have resigned myself to a life of extreme pain, while hanging on to the beauty in my life. However, each day for the past 1 1/2 years, lying in bed crying from such agonizing pain, I have prayed for the doctors to find a tumor. But that old addage- be careful what you wish for – in the last 6 weeks I have buried 2 neighbors, both exersize workhorses, whose fitness and health habits could put them on the cover of any fitness magazine. Non-smokers, both died from small cell lung cancer. Go figure. I am ready to give up the salads and head right to dessert – anyone care to join me? Cancer may end the nightmare of pain, spasms and falls. But it might not be that insant cure we all hope for.