I really need to talk to others with this condition.. i have been given booklets but know from my other condition it really helps to share how coping with others
my husband was just diagnosed with this after having a bone marrow test. Problem is we know nothing about it. Have'nt even spoken to doctor or consultant was told by letter. Have had to find out on line. He has no symptoms, that we know of. Has more medical problems.
It was my third bone marrow biopsy that added CMML and I got told by letter too and had to search online. I have seen Consultant but really what I need is a one to one with a specialist nurse who understands the condition and share with others.... Being fair to Consultant it was a late appointment and I had to get home to my husband who was ill. I also got the impression from the Nurse that not many of us have this condition in each area.
In the last year I was given diagnosis of Marginal Zone Lymphoma and then Immune Thrombocytopenia and then Myelodysplastic syndrome. Platelets are less than ten repeatedly.. Latest diagnosis is CMML.
I already have post polio syndrome with fatigue.. so this is extra fatigue and I bruise very easily specially my lower right arm... I use an electric wheelchair... This means that their normal advice I often cannot manage but as most know little of Post Polio Syndrome ... I really hope to find others so that we can share information....
My husband been having bloods checked for the past 3 years, Monocytes were getting higher so bone marrow test done and this was the result. All the articles I have read say it is rare. For now no problems except bruising easily. Bloods being monitored. I think there is nothing they can do until it gets worse, if it gets worse.
Hi just type in Search Forum above and it gives you people who have been dealing with this for years.Seem to be the same as ourselves, looking for more information. All seem to be be wait and watch. Hope this helps you a wee bit at least.
Oh hi robin you're the wheelchair user I'm looking for as I am as well just started treatment for mds with aml involvement . Still completely at a loss and going bit scared . How are you , anything I can do to help ?
