[lacanada1]

Hello. Another question to throw out there:

Does anyone know of cases of myelofibrosis being confused for MDS? I have been diagnosed with MDS-RMCD (currently on growth factor therapy). My bone marrow 'issues' were first discovered more than 4 years ago, when I was in my late 20s (now in my early 30s). In that time, I was told at first I had hypolastic anemia that was becoming AA, a year or so later, they thought I was 'rebounding' after what must’ve been a ‘bone marrow insult’ but still had some signs of 'fibrosis' in my marrow, a year after that and since then, they’ve told me I have a slowly progressive MDS with no cytogenetic abnormalities. My white cells are back up now, but Hgb has ever-so-slowly declined in the past two years, bit by bit.

On my own, I recently had a genetics test on 23andme.com. I know that I shouldn't take it all seriously, but of all the diseases, traits, etc, that it scans for, I came up with 'substantially higher risk' for myeloproliferative disorders and CML. The report stated that I have a predisposition to develop a JAK2 mutation, which is apparently the cause for myeloproliferative disorders. I told my hematologist when I last saw him a couple weeks ago, and he said that the test was wrong and based on shaky science, and that I am JAK2 negative. I have definitive MDS, he insisted.

I'm all a bit confused now. Anyone ever heard of myelofibrosis masking as MDS?