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Hi Cornelius - I had idiopathic neutropenia for about 6 years before finally being diagnosed with MDS in Sep 2011. I had never heard of MDS until I was diagnosed subsequent to a serious chest infection like you. My Haematologist thought I had probably had MDS for about 2 years pre-diagnosis due to the level of disease. However my disease level improved dramatically with a providential drop in blast cells in early 2012 right when I was heading for a BMT.
I have pancytopenia so my path results are all lower than yours but white cells are my biggest problem - last month WCC 1.2, Neut .45, Lymph .43, ANC 460.
I have been spreadsheeting my monthly test results using Excel since January 2011, so that I can see how I am progressing over time. Most results are fairly stable except for the white cells/neuts/lymphs which so far this year have dropped around 25% on last years average. Even so I have only had a couple of infections (UTIs) in the last 2 years so I'm finding that by being very careful I can live with the MDS RCMD OK so far.
So don't be too discouraged! If you don't have blast cells you might be able to have Growth Colony Stimulating Factor (GCSF) which should help your white cell count. I often wonder why my GP didn't recommend that in the years before I was diagnosed with MDS.
It seems that far more MDS sufferers have problems with red cells and platelets than white cells so it's always interesting to find someone with a white cell focus.
I'll follow your progress with interest!
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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