MDS UK

I went for a blood test yesterday to find that my white blood count has been falling steadily for 12 months or so - she believes this may be a problem with my liver / spleen rather than MDS. The consultant also suggested that in a recent paper it was suggested that MDS is diagnosed too readily, especially in someone whose bone density is normal. Has anyone else heard this please? (I did not trawl the site to see if this has already been raised (Its getting late)so apologies if it is already there) Thanks

Hi Alan

Sorry to hear your white counts are getting lower. Of course, there can be lots of reasons for this and spleen/liver issues will need to be explored.

On this site, we have of course read about some mis-diagnoses of MDS but, by and large, with a rare disease like MDS, the issues that patients have are usually about the length of time it can take to diagnose from initial symptoms. I think as a group that we feel that it can be a rather under-diagnosed disease - especially as many people seem to be diagnosed almost "by accident" when being investigated for other things!! As I understand it, it is not possible to diagnose MDS accurately without a bone marrow biopsy. I am not sure what you mean when you talk about normal bone density in relation to MDS. In MDS, many people have a hyperactive bone marrow and make lots of blood cells but, because they are abnormal, they die away before they can become effective in the bloodstream. I have not read about any links in MDS with bone density? i.e. osteoporosis or lack of it? Maybe you could let us know what the research was if you can find this out from your consultant?

I hope you soon get some answers to your problem with your white cells. If you are diagnosed with MDS, please contact Sophie for more information.

Best wishes

Chris

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Chris. (F) Age 62.MDS diagnosed in 2008. Closest sub-type is CMML-1 but with anomalies! Normal red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-monthly.SE Essex

Hi Chris, thanks for this.
Having thought about it, I did have a bone marrow biopsy although I think this was done due to a low testosterone count which has been put right with Testogel.
I am creating the white cells but they are short lived, I also have liver disease cause by either Hep B or C, being too fat, drinking too much or a virus and the consultant said that I have an enlarged spleen which may be holding onto the white cells hence the drop in the count.
This has been going on for almost two years and they are monitoring every four months although I have a blood test tomorrow which may reveal more, One consultant did think my liver was back to something approaching normal but I guess he will reappraise in light of the next test.
I will keep reading and posting; thanks for the support, it is invaluable
Regards
Alan

Dear Alan

Well I hope you were able to have a good discussion about your latest blood test results and find out if your liver disease was improving. Regardless of the original cause of the Hep B/C, are there steps you could now take yourself to eliminate some of the possible theories as to the cause/ improve your liver function?

It's important to get the right diagnosis and if you don't feel that sufficient progress is being made, you could always ask for a referral to a haematologist for a second opinion? Are you seeing haematologist at the moment or a liver/spleen specialist?

Best wishes

Chris

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Chris. (F) Age 62.MDS diagnosed in 2008. Closest sub-type is CMML-1 but with anomalies! Normal red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-monthly.SE Essex

Hello Alan

My father's blood counts have also been dropping a lot, and not maintaining for long post transfusion. One of the doctors that he has seen has suggested that his spleen might be a root of this, as it is enlarged and may be filtering out healthy as well as spent cells.

As Chris says the next step will need to be to see what your consultants say.

I hope that when you get your diagnosis your doctors are able to prescribe a course of treatment that allieviates your symptoms.

K x

I think I am fortunate that I see both specialists. The appointment has been brought forward, so will keep you posted. Thank you for this.

Karen

Thank you - I didnt think I was the only one! I had a kidney infection at the doctor was able to tell I had an enlarged spleen by pushing on it. I dont see the consultant until October, I am hoping for news and idea of treatment then... Thanks