MDS

Hi everyone,  I'm new to this forum so feeling a bit unsure what to expect. I've just been diagnosed with mds. I've had a bone marrow biopsy and luckily there's no leukaemia detected but I'm waiting for results on what my risks are. Has anyone else gone or going through these early stages? I'd welcome any words of encouragement. Thank you x

  • Hi Col

    Firstly welcome to this corner of the community, although I wish I had met you elsewhere. 

    I was diagnosed with MDS in March 2015 so perhaps that might give you a ray of hope. My haematologist had said to me 3 or 4 months previously that he thought that my bone marrow was failing which was worrying. When my haemaglobin was dropping, he sent me for a bone marrow examination and the results indicated that I had MDS which I had never heard of. He advised me to go home and read up on it. Like you, I haven't had leukemia detected but I know that there is that risk. 

    My particular diagnosis is that I have Refractory Anaemia which is a low red cell count but lately my neutrophil count has been giving concern. My numbers have stabilised recently although they're low.  

    How often do you have bloods taken Col? Sometimes mine are every 4 weeks, 8 weeks or 12 weeks if the numbers aren't too bad.

    Take care and stay safe Col.

    Tvman

    Love life and family.