[Lauren H]

Hi Greg,

Thanks so much for your thoughtful response and sorry for the delay with mine; I didn’t realize you had to subscribe to your own thread to be made aware of responses!

That’s my understanding about the battery of tests , too. I know with anti-neutrophil antibodies the test often yields false negatives and positives, which makes diagnosis even more difficult. I also have a feeling that, like Chirley, my medical situation is evolving and so I will have to be patient for awhile longer.

I know it would be incredibly rare for someone my age to have MDS, but I have Poland’s Syndrome, a congenital birth defect that affected my bone structure on the right side of my body. It seems there may be some evidence that patients with Poland’s have higher rates of leukemia.

My bone marrow biopsy report from Genzyme doesn’t seem to have a “Cytogenetics” section, but there is something about “markers” in the “Immunohistochemistry” section. There is a “chromosome analysis” but very little is on this page.

I think the chromosome anomaly you are referencing in cyclic neutropenics is ELA2; my hematologist is going to test for this if none of the other tests yield and diagnosis. I have been doing a lot of research, and it seems like cyclic neutropenics also have cycling monocytes. When neutrophils are low, monocytes are high, and there is no evidence of this with me.

As for hemoglobin, the last result was within the normal range, 13.4. I had one test in 2009 where my hemoglobin, MCV, MCH, and WBC were all low. Hm, they haven’t checked my copper levels. I’ll bring this up at my follow-up on Dec 16th.

The other thing I noted from the forums is that MDS often leeches minerals, like iron, from the bone marrow. So even if the levels are normal in the blood, the marrow may not be. Is this accurate? The lab was not able to find stainable storage iron during my bone marrow biopsy, but my blood iron (to my knowledge) is fine. Is this something I should be worried about?

Thanks so much for your response and take care.

Lauren