[BruceinWA]

Hi,

First I'd like to thank all the people who have posted their stories. It really helps.

I'm in my mid 50's.

My story started with an mri to diagnose hip pain a few years ago. The radiologist saw "red marrow reconversion". The mri led to a cbc which revealed mild pancytopenia and led to an appointment with a Hematologist.

A bmb was performed and while it wasn't normal it also didn't meet the requirements for a diagnosis (5% erythroid dysplasia, 2.6% blasts, hypercellular marrow, and a few other things that weren't normal). The pathologist did state that if nothing else could explain the non normal items then an emerging case of mds had to be considered.

I had to fire the first hematologist due to incompetence and decided to educate myself on mds and have blood work done at an independent lab to follow the pancytopenia on my own until something changed.

Something changed last fall and I was able to make an appointment with a well regarded Hematologist/Oncologist in the local area. His workup revealed reticulocytosis, almost no haptoglobin, no pnh clone, no compliment issues, etc. AFAIK he's ruled out everything he can with blood tests. There is also mild painful splenomegaly.

The next Hematologist appointment is later this month. I feel that something is changing due to easier tiring, increasing spleen pain, easy bleeding, strange itchiness and more unexplained bruising than before. This time I might let the Hematologist schedule the bmb he always suggests.

I have to say I'm not a fan of the bmb and it's hard for me to reason the expense and hassle of the outpatient procedure until the cbc tests start going farther downhill or I start feeling noticeably worse.

I've been reading the wealth of information posted here for almost two years now but declined registering because I wasn't diagnosed with anything. I'm also a little wary that my web browser always tells me it's an unsecured site.

Today I decided that I'd come out of lurking mode and introduce myself.

Bruce