[Friedbrain]

Just got off the phone with my hematologist and I want to cry.....the bone marrow biopsy I had three weeks ago turned out to be a bad sample, so he refuses to speculate on the results, leaving me with no answers and nowhere to go except more monitoring, more doc consults, and possibly another bone marrow biopsy (with what guarantee that that one will be any better?). Any help in interpreting what I *do* know would be appreciated.

Circa Feb 2012, I reduced the cortef (steroid) I'd been on for 9 years, from 15mg to 10mg. Since then (so yes, for 1.5ys now), I have had abnormally low WBC-basically due to neutropenia. At its lowest, was 2.9 WBC with a Abs neutrophil count of 890 (usually around 1300). I've also had borderline low RBC around 3.7 (above/below); and so-so platelet counts (one time 139; otherwise b/w 146-190). I have autoimmune problems so my rheum wants to put me on a medication but since my neutrophils had dropped even lower, she said she wouldn't (azothioprine can reduce bone marrow production) until a hematologist consult. Hematologist agrees with rheum that the autoimmune problems could be *causing* the low blood cell counts, but ordered a bone marrow biopsy to rule out other problems. That was done in early Aug.

Here's what he had to say about it: the sample was "suboptimal"-small sample, primarily subcortical bone; aspicular. He did say that the result showed 30% cellularity (when it should be "45-60%"; reading through here, though, it looks like it's age related, and I'm only 46, so maybe should be 54%?), which suggests that the bone marrow is "underactive". A nurse told me earlier that they were running cytogenetic study on the sample, but he didn't mention that at all (getting ANY info was like pulling out teeth; I finally told him to please just send me the report).

I tried asking him what could cause the "underactivity" but he was reluctant to answer; he mumbled maybe diet, and agreed that autoimmune problems could but then he refused to speculate more. He said that we should continue to monitor the blood cell counts (like it'll change after 1.5ys?), follow back up (like talking will do any better than it has over the last 1.5ys?), and I could always follow up with my other doctors (um, the docs who sent me to him to get answers).

I feel so frustrated! I start a full-time job on Monday and was hoping to have answers by now, and on some medication that could help me get better. At this point, I have no answers, may need another biopsy, need to see more docs, and am out of time.

Any advice would be most appreciated. My guess is that it's autoimmune, since it worsened when I decreased the steroid. Any things I should look for or research? Thank you!