[Marlene]

Hi Paul,

I would suggest not to pursue potential treatments in detail until you have a specific diagnosis. It's just too stressful to speculate as to what your disease is and to decide what your course of treatment will be.

You really need a bone marrow biopsy and aspiration to diagnose any bone marrow disease. And treatment will be based on that.

I will never forget the day John's doc called with the news of his dangerously low counts. They got him in to see a hematogogist right away and based on the blood work, they gave us four possibities starting with Leukemia, then MDS, the SAA then PNH. Like you, I jumped into researching all of them and quickly became overwhelmed. John's first BMB was incomplete but at least it pretty much ruled out Leukemia. The second ruled out MDS and PNH. It was so much easier to research one disease than all of them because once we knew, we could get into action and take steps in finding the right doc/center for treatment.

And always, get a second opinion.


The one thing these diseases teach you is "patients". You spend a lot time waiting for things.

Hang in there,
Marlene