My husband has it. He has lots of dizziness. Is this MDS related? Any thoughts? Any experience anyone can share? Many thanks. 

  • Hi Malfi welcome to the forum and I am sorry to hear about what is happening for you and your hubby.

    I champ in  another group but saw your post and thought I would pop by to ask if you can write out the MDS EB in full rather than the abbreviations as I dont know what it is that you are asking and Im wondering if that will maybe put others off replying as they may not know either.

    Sorry for sounding so dim just want to make sure that you get the replies that you need . xxxx


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  • Hello Malfi, I too have MDS EB, (bone marrow cancer, affecting quality of blood cells) diagnosed in July. While I don't myself have dizziness it was one of the questions they asked me at the time. I have anemia with insufficient red blood cells to carry oxygen around body so I suspect that could cause dizziness. In my case I get breathless far too easily, another sign I believe of insufficient oxygen around body. But I have no medical training so this is only my perception.

    Sorry that you and your husband have to face this situation.John

  • Thank you, John. Your support means so much. My beloved is bleeding in too many places. We wait, we hope, we love each other.