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Hi Barbara K
As you will see by my signature block I have MDS and hypogammaglobulinaemia and have been having gamma globulin infusions since September 2011 (currently having a 2 month break). The infusions have made a big difference to my well-being.
I had abnormal blood results - especially with white cells/neuts/lymphs - for at least 6 years before being diagnosed with MDS. I had a BMB/T in 2008 which didn't show MDS, but my specialist thinks that I had developed MDS at least 2 years before the biopsy which did show MDS and hypogammaglobulinaemia (Sep 2011) so it must have developed around 2009.
I have mentioned this so that you will not hesitate to have a biopsy if advised to do so. In fact you should even request one if you are concerned or go to a different specialist if necessary.
In my own experience GPs and specialists can become complacent when they get used to seeing your pathology results and you are not looking or feeling drastically unwell. I was only diagnosed after I had been ill with bacterial bronchitis and decided to take advantage of a voluntary medical check in my workplace. This GP noticed that my platelets were also lower than normal and insisted that I see a specialist again. In the mean time my previous specialist had retired and the new one followed up with a BMB/T.
Hope this helps!
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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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