Just joined this forum
Posted: 31 Oct 2013 10:16
Hi everyone
Just introducing myself to this forum. I'm in Australia, and I have MDS (RCMD). I think forums are a marvellous tool to find out more about MDS and how other people are coping with it - so many courageous people out there!
In September 2011 I was diagnosed as being on the cusp of RAEB2, as I had 10% blasts.. I had had chronic idiopathic neutropenia for around 6 years prior and had become progressively unwell over about the previous 2 years. At the same time I was diagnosed with hypogammaglobulinaemia, for which I have been having gamma globulin infusions monthly ever since.
I decided to take the BMT option, and my older brother turned out to be compatible. Over the next 4 months, I had all the tests to see if I would be a suitable candidate for transplant, and these culminated in another BMB. I had been praying that God would show me if I should go ahead with the transplant. Amazingly, when the results came back my blasts had dropped to 2% and I was re-diagnosed as RCMD and taken off the transplant list.
I have monthly blood tests and am remaining reasonably stable. Although all my cell lines are abnormal, only the white cells and neutrophils are a worry at this stage. Last BMB Jan 2013 showed blasts still less than 5% overall.
Do any of you have hypogammaglobulinemia as well as MDS? I'm interested to know if there's a connection with low globulins and low white cell/neutrophil count. Do any of you know whether having gamma globulin can compensate for the low white cell count? The reason I'm asking is that even though I'm mostly severely neutropenic, since starting the gamma globulin I rarely get an infection.
Just introducing myself to this forum. I'm in Australia, and I have MDS (RCMD). I think forums are a marvellous tool to find out more about MDS and how other people are coping with it - so many courageous people out there!
In September 2011 I was diagnosed as being on the cusp of RAEB2, as I had 10% blasts.. I had had chronic idiopathic neutropenia for around 6 years prior and had become progressively unwell over about the previous 2 years. At the same time I was diagnosed with hypogammaglobulinaemia, for which I have been having gamma globulin infusions monthly ever since.
I decided to take the BMT option, and my older brother turned out to be compatible. Over the next 4 months, I had all the tests to see if I would be a suitable candidate for transplant, and these culminated in another BMB. I had been praying that God would show me if I should go ahead with the transplant. Amazingly, when the results came back my blasts had dropped to 2% and I was re-diagnosed as RCMD and taken off the transplant list.
I have monthly blood tests and am remaining reasonably stable. Although all my cell lines are abnormal, only the white cells and neutrophils are a worry at this stage. Last BMB Jan 2013 showed blasts still less than 5% overall.
Do any of you have hypogammaglobulinemia as well as MDS? I'm interested to know if there's a connection with low globulins and low white cell/neutrophil count. Do any of you know whether having gamma globulin can compensate for the low white cell count? The reason I'm asking is that even though I'm mostly severely neutropenic, since starting the gamma globulin I rarely get an infection.