Thank you, Kiwi. It definitely mystifies me why my body “chose” this particular symptom given that some people with much higher M protein levels never have any problems.

My baffling neuropathic symptoms had been increasing for two years before I finally went to a neurologist, who found the M protein and sent me to the oncologist. A bone marrow biopsy revealed a 5.8% level of abnormal B-cells, leading to the diagnosis of MGUS as opposed to Waldenstrom Macroglobulinemia, which requires a 10% level of abnormal cells. By that time the neuropathy had gotten quite bad, so we collectively decided on the rituximab treatment, as it has shown some success in helping MGUS neuropathy. Though the oncologist would have preferred to add bendamustine or cytoxin to the treatment mix (SCCA in Seattle treats rather aggressively), I convinced him to try rituximab alone. My thought was, why add a toxic chemotherapeutic, as it might lead to worse problems in the future? My blood work was excellent, except for the M protein and SGPG levels. The oncologist said, “If it weren’t for your neuropathy, we wouldn’t be sitting here”. Unfortunately, I had what he called an “idiosyncratic reaction” to the drug. While it ultimately seemed to lower my M protein levels, it made the predominant symptom worse.

Plasmapheresis is massively expensive, and has not shown much success with MGUS neuropathy. We need some kind of chelating agent to lock onto the auto-antibodies and flush them out of the body, but to my knowledge, it doesn’t exist.