[Marlene]

Hi Aaron,

Sorry to hear the difficulties you are having getting a diagnosis. It is very important to get an accurate diagnosis before starting any treatments. I'm not very familiar with MDS or Myelofibrosis, they are two different diseases but have been know to exists at the same time. So you can have one or both. Hopkins should be able to pinpoint an accurate diagnosis.

And yes...cytopenia is low counts. Add the word "pan" in front and it means all three lines are being effected. Pancytopenia.

On the red cell transfusion....how low is his hemaglobin when he goes for transfusion? and how many units is he getting?

I assume they have checked to make sure B12, folate, b6, iron, and serum copper levels are all in the mid normal range. And that his body is not destroying the red cells he's getting. They should have also checked to see if he's making any new red cell....that's the absolute reticulocyte count. If he's not making any, then it's not uncommon to get weekly transfusions. One last thing that comes to mind is a possible slow internal bleed in the GI tract or somewhere keeping his his HGB low.

You may want to list his current counts and biopsy results so that others with more experience with MDS can give some insights.

Take care,
Marlene