Myelodisplastic Syndrome

  • Posts: 1
    14/02/2016  06:15

    Hello everyone, I can't say I'm pleased to be on this forum.

    I have MDS- RAEB2 which is incurable and will eventually deteriorate to Acute Myloid Leukemia.

    I am stable at the moment and being treated with Azacitidine which will stop working eventually.

    It's a great pity my GP did not pick up on the symptoms, I saw an ent specialist privately as I was getting repeated sinus infections which did not respond to antibiotics.

    He wrote to my GP suggesting an immune problem in January 2012 and my GP ignored this.

    I can't help thinking if I was diagnosed sooner I would not have such a poor prognosis.

  • Posts: 41
    16/02/2016  14:06

      Hi Goldtooth, We are sorry to hear you are going through such a tough time.  If you would feel it would be helpful to speak to somebody, please contact us on our Support Line – 0800 090 2309.