Yesterday I was diagnosed with Waldenstrom's macroglobulinemia; I have the MYD88 wild type. My primary symptom is peripheral neuropathy, with my feet worse than my hands. It first started ~5 years ago, but has progressed significantly in the last year or so. I have a thousand questions at this point, but will ask the following of this group:

1. Has anyone experienced neuropathy this early on in terms of diagnosis? What treatment(s) have you had, and have they been successful? My doctor is considering rituximab, which she normally would not start at my current IgM level of 800, but she thought perhaps it would slow progression of my neuropathy.

2. For those who have MDY88 wild type, what has been your experience? Are you being treated differently than patients with the mutation? I understand that the wild type tends to be more aggressive, and is less responsive to some standard treatments.

Any advice on how to navigate these early days would also be welcome. I was only diagnosed with MGUS in September.

Thank you.