I have been on W&W for 8 years now, and my Dr. says that my CLL has been "indolent" in that my labs have been generally abnormal but stable. On my last 3-month follow-up, I mentioned to my Dr, that I have been experiencing increasing Peripheral Neuropathy for some time, and he recommended an IGM test to determine if my levels are elevated.
I received a phone call from my Doc yesterday (not usually a god thing)! and he said that results of this test show that my MAG values are off the chart at over 70,000 TU (titer units) The standard range is 0-999 TU! I was earlier diagnosed with Monoclonal Gammopathy which is a protein often found in CLL patients and other B-cell diseases. But this discovery has me very concerned, and may require initiating CLL treatment, perhaps with a monoclonal antibody such as Rituxin.
Needless to say, the precarious security of watch and wait may indeed be over. We're never ready for that!
Anyway, I was wondering if anyone on this site has a similar issue? From what I have read, Anti-MAG oeripheral neuropathy is very rare, and perhaps is found in only 5% of people with blood disorders. Just another issue us CLL'ers have to be aware of.