Hi Naive, and others:
I want to chime in here as my husband shares some similarities with you and others on this thread. He was diagnosed with MDS in Jan. 2018. He has low platelets (around 50,000) and has become severely neutropenic with WBCs 1.1 and neutrophils 0.1, somewhat steady in the last 6 months although 2 wks ago his WBCs went to 0.7. Lymphocytes are 0.6. His RBCs are normal. He has been so fortunate to have not had any fevers or infections. He is active around the house, though more fatigued that his usual, and has lost 20 lbs. this year. He is a Vietnam veteran.
Two weeks ago he had a finger turn purplish and then over a week's time, so did the rest on that hand. He was diagnosed with Raynaud's. The fingers hurt when touched and I am concerned that it is vasculitis or something else. I did find some research stating that Raynaud's can be an "immunological manifestation" of MDS.
He also had a CT scan and PET at diagnosis time and was found to have focal lymphadenopathy...big retroperitoneal lymph nodes. We don't know why. A biopsy was benign.
He had a repeat CT last week and we'll get the results next wk when he sees his hematologist.
As his wife, I have found the whole scenario frustrating as it seems we have few good answers, but we are also grateful that the course has not been too rough thus far.
Best to all.