Hi, I was diagnosed with Acute myeloid leukaemia (AML) 10 years ago, I have been in remission for 9 years.
During my routine yearly blood test, my white counts were low, fast forward a few months and I was diagnosed with Myelodysplastic syndrome (MDS).
I need a stem cell transplant but currently there are no matches due to a high number of antibodies in my blood due to blood transfusions.
Currently am well, walk at least 3 miles a day.
Is there anyone with Myelodysplastic syndrome (MDS) that has low neutrophils and white count? My hb and platelets aren’t too bad.
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Hi @Sarah1 a great big welcome and thanks so much for posting.
I expect it is an anxious time for you.
I hope others will be able to share their our experiences for you.
Have your medical team suggested a way forward for you?
Please do let us know how you get on and I look forward to hearing more about you.
Take lots of special care of yourself.
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Hi, they are still hoping a suitable donor will be found. I have an appointment at the beginning of March at The Christie so hoping to have a way forward.
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Hi @Sarah1 please do let us know how your appointment goes at the beginning of March.
I am not good with the waiting and not knowing.
Be very kind to yourself, do nice things and keep walking, I find it is a wonderful occupation for a nosey person who also likes fresh air.
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Everything crossed for a match being found! It must be a very anxious time for you.
How are you doing?
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I’m doing okish, finding that I am getting more tired. Always anxious at blood tests, and wondering if the phone will ring to say a donor has been found.
A 9/10 match was found in Germany but they couldn’t contact the donor.
Thanks for asking.
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That must have been really hard - a roller coaster of emotions I can imagine. I hope others will be able to share their experiences with you.
You take good care of yourself X
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I had my appointment at the Christie last week. Bloods still low but stable so no intervention.
Antibodies blood test refine as my local hospital used the wrong vial and it was rejected.
Has anyone any experience with high antibodies?
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Hi Sarah
I was diagnosed with Acute myeloid leukaemia (AML) nearly 7 years ago , transplant 6 years ago . All good until beginning of last year my neutrophils started declining, had a biopsy in November which showed Myelodysplastic syndrome (MDS) . Another biopsy in January to check karotype and mutations. Then I had a donor lymphocyte infusion from my original donor to try and get 100% chimerism again.
I am feeling fine otherwise , this mornings bloods showed neutrophil count was 0.7 ,a slow increase from last weeks 0.5 The plan is another top up of cells every 8 weeks and monitor the Myelodysplastic syndrome (MDS). It’s all very complicated.! I hope they find you a donor soon and your Myelodysplastic syndrome (MDS) remains stable.
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Thank you - keep well 
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Still no donor match, have been told that they will check database again in 3 months.
Taking the positive that I am well apart from the tiredness.
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