Diagnosed with MDS

Hi ,
I am Suzie and seventy six and I am so pleased I found this forum.

I first went to my GP in March because I had a really bad pain in my back, because I had not had a full blood count done in years they decided I should have one, they called me the next day to say I needed to have another one in two weeks, after this one I was told my platelets were low as well as my white and red blood cells, I had another test two weeks later and they were just the same, so I was told they would make an appointment for me with the haematologist
at our local hospital.

I first saw my haematologist in May, and had blood tests done, on my second visit they booked me in for a Marrow Bone Biopsy and a Bone Marrow Aspiration

On my next visit in July I was informed that I had bone marrow failure and they had sent my tests to a hospital in Liverpool for intensive testing.

On my visit August the 14th I was diagnosed with Myelodysplastic syndrome (MDS), my mind just went into a spin as she told me that there was no cure and mentioned Leukaemia and blood cancer, I just sat there in a daze with tears running down my face, I was not expecting anything like that, I had never heard of Myelodysplastic syndrome (MDS) , I was given a book to take home and read to explain what it all was and how it would effect me, along with names and telephone numbers of support nurses.

The only thing I know at the moment is that I have
Platelets number 85
Blasts 1%
Hemagloben 100
Low white and red blood cells

I am still waiting the results of my Genetic test so I do not know what stage I am at.

My mind is all over the place at the moment, I am trying really hard to face up to it, but I feel so alone and bewildered, I have read posts on this forum from people who have been diagnosed and this is helping me to understand it more.

Sorrow about the long post xx


Dear @Suzie1
Thank you for posting and welcome to the Forum. I do hope you find this a supportive and safe place.
It is no wonder your mind is buzzing with all the information and of course waiting for more clarity.
Please do have a look at our information on What is myelodysplastic syndromes (MDS)? | Blood Cancer UK? I hope this is helpful and does talk about how the Haematologist assess ‘risk’ in Myelodysplastic syndrome (MDS) to decide upon the treatment or monitoring pathway.
Please know that if you would to talk to one of our Support Team we are here for you: Blood cancer information and support by phone and email | Blood Cancer UK and we are very glad you found the forum.
Kind regards


Hi @Suzie1 welcome, you are now part of our forum family, so you are never alone again.
@GemmaBloodCancerUK has given you a brilliant response.
I am not surprised that you feel shocked and bewildered.
When I was diagnosed all I could see was the diagnosis in my head with bright lights with zig zags around it and I walked out of the room in a daze, just repeating the words so I did not forget them.
I felt in a bubble with the world going on around me and yes, so very alone.
My thoughts and emotions were in overdrive.
You have support nurses contact details and that is what they are, they are there to support you so please do contact them with any questions you might have.
You also have the Blood Cancer UK support line and they are there for you on 0808 2080 888.
You never have to say sorry on here, that is what we are here for.
Give yourself time and be very kind to yourself. xx

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Thank you Gemma, I have read through the information you suggested and I now understand a lot more about Myelodysplastic syndrome (MDS).

Still waiting for my Genetic results, will be a lot happier when I find what stage my Myelodysplastic syndrome (MDS) is at, until March this year I had not been to a doctor for just over twenty years.

Thank you for your support.

Stay safe xx


Thank you Erica, for your support and kind words.

I am still waiting for my Genetic results to find out what stage Myelodysplastic syndrome (MDS) I have.

Take care and look after yourself xx

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