Living with MDS

Thank You for sharing I am just wanting to understand more of what to expect.
I too get tired and have Neutropenia and low wbc count. I also get irritation on my tongue and occasional rashes that cause no itching?
Can anyone relate?

Hello. I was diagnosed with MDS (iso 5q deletion) 3 1/2 years years ago at age 50, and my blood results were a bit off for 3 years before that. I'm also on "watch and wait". Currently I'm moderately anemic and mildly neutropenic, but haven't needed treatment,and live a pretty "normal" lifestyle. I just get tired. The haematologist is not really able to give timeframes, but if my haemoglobin drops below about 80 she has said I'll be given blood transfusions as needed and started on lenolidamide to stabilise red cell count. I'll need an allogeneic SC transplant down the track. I understand that a number of different factors play into how quickly MDS progresses, and individuals are also different. Initially I was very anxious, but I've learned a lot about living one day at a time and being very thankful for each day. Any long term planning is quite difficult and seems a bit futile. Wishing you all the best.