Hi Lisa -Your story is similar to mine. I was diagnosed in March of 2009 with WM. Had 8 rounds with Rituxan. No help. I am now dealing with severe PN that is moving up my legs into the back of my thighs. My onco/hema says there is no way it is related to my IgM issue as the levels are too low (537 at this time). What I research says differently. I have an appointment with my family doctor in 2 weeks to discuss what step to take next. My Oncologist says I need to go to a university hospital to have this PN looked at to see what is causing it. I too am 48 and a female.
I am thinking a second opinion is needed as far as IgM issue. I may go to the University of Washington in Seattle for a workup. It all gets so confusing when you are outside the box with diseases.
Just wanted to let you know there is someone else in your similar situation. Diane