Greg's story
 

Hi, I am Greg, 38 and new to the forum.

I have always been very healthy and all this really scares the life out of me. I am as yet undiagnosed, but have an HB of 6.4. I am due for another transfusion on Friday. My white cells and platelets are normal. My hemotologist says this is not typical of MDS, but he can not rule it out.

He says I am making red cells, but they are not popping out! My first BMB was not all that conclusive and just said it was hypercellular. Due for another BMB soon. Hopefully we will get to the bottom of this, but I am really feeling so low at the moment.

Hi Greg. Many of us know the apprehension you feel, not knowing exactly what diagnosis you'll receive or how serious it is.

Your hemoglobin is definitely low and you need to know why. Since you are hypercellular you can rule out aplastic anemia. Did they tell you anything about your bone marrow biopsy results other than "inconclusive"? If you have MDS then the BMB would presumably have revealed abnormalities in cell shapes or chromosomes, but your hematologist must have reason not to have ruled out MDS.

It's a challenge to understand the terminology used on lab results but I encourage you to get a copy of your previous and/or next BMB report and ask your doctor for a translation into terms that you as a patient can understand. It's one of the ways to become a partner in your health care, gain some control over whatever disease or condition is doing this to you, and be ready to help make decisions when the choices are clear.

If you didn't already get them, ask for your copy of the free MDS materials from the Aplastic Anemia & MDS International Foundation.

Thanks for the kind words Neil.

The report says hypercellular with erythroid hyperplasia and megaloblastic maturation. The blood morphology is hypersegmented neutrophils and oval macrocytes.

They don't sound normal to me!

Greg,
I have Pure Red Cell Aplasia. It is very rare, and the pathologist might overlook it. I don't make red cells but make the other lines. Your description does not seem like PRCA, but make sure they consider it.

Hi Greg!

Erythroid hyperplasia means the marrow has way more baby red blood cells than would be normally expected, which ties in which your doc's comment that you are making them, but they aren't making it into your bloodstream.

Megaloblastic maturation means you have some giant red cells in the marrow that result when the nucleus of the cell and the rest of the cell don't mature at the same time, like they should.

Hypersegmented neutrophils are white blood cells with too many lobes on their nuclei.

And Oval Macrocytes are too-big red blood cells that are oval instead of round.

I'm not a doctor, but has yours talked about megalobalstic anemia? All of these things in your BMB are associated with that kind of anemia, which can be caused by B12, Folate, or copper deficiencies.

You've probably already had all that checked, but I thought I'd ask. Even if the B12 & Folate check out, it's important to check the copper as well. Hopefully you just have a vitamin deficiency and not MDS.

Take Care!

Greg

Hi Greg,

The Docs were talking about B12 and folate and I was put on treatment for 6 weeks, but there was no response, so I am worried about MDS.

Due to see the hemo this week.

Hey Greg!

We'll keep our fingers crossed for something definitive out of your BMB report. Sometimes the uncertainty is the worst part of these diseases.

Take care!

Greg