Yes! I was diagnosed first with neuropathy. A year later my symptoms had changed and worsened. My fingers were numb, extremely sensitive to cold. My toes were the same only worse. The third and fourth toes on each foot turned blue, purple, and some tissue blackened. All toes were inflamed; I couldn’t wear shoes last December and January. (In Wisconsin) I could only carefully warm my toes with a heating pad.
Multiple tests, months of searching and consultations later, I saw an Oncologist who initially diagnosed Cryoglobulinemia Type 1. Following a bone marrow test, Lymphoplasmacytic Lymphoma was found; Waldenstrom’s was given as another diagnostic term.
I started chemo in July; Rituximab and Bendimustine. I have one treatment left. My IGM numbers have dropped from 1500 to 400. No numbness in my left hand, barely any on right. No pain with cold with fingers and toes; no color changes. I still have some numbness in balls of feet, toes are sensitive, which we take as a good sign!
I have been living a Covid type lifestyle, as my immune system is knocked down. I have not caught anything. We include in my “bubble” my grandchildren and their parents when they are healthy!
I hope my IGM numbers dip to 290; which would be within normal range. It’s hard when you can’t be “cured” but I am optimistic. Hoping for a lengthy remission. I’m 71; another round of chemo could be in my future; which of course no one wants, but I know it worked!
I hope the best for you. Shoot me questions and keep me updated!
I am grateful for my doctors at UW Madison. We are lucky to live 20 minutes away.