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blood disorder
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blood disorder

Hi,

I have chronic Fe deficiency anaemia.  I require blood transfusions every month or so.  I also have intermittant neutropenia (sometimes just in normal range and sometimes critically low at 0.5). My lymphocytes are always low anywhere between 0.3 to 0.8   Despite the transfusions (117 units) my Fe level is still less than 5.  I have had iron infusions which have increased my iron in the short term but unfortunately doesn't prevent the anaemia because my reticulocytes don't increase. I can't have the infusions any more because I had a reaction called Steven Johnsons Syndrome from my last infusion.

I don't get a lot of infections but the occasional infection that I get can be severe.  I had pneumonia that spread from the base of my left lung to all lobes of both lungs despite intravenous antibiotics.  I was on a ventilator in ICU for that.

BMB x 4 shows nothing particularly abnormal.  3 showed no iron stores with dyserythropoiesis.  Another showed normal iron stores with dyserythropoiesis and dehaemaglobinisation. Blood tests show an increased ESR and slightly abnormal b2 microglobulin with slightly abnormal globulins (?)  The haematologist said one of the tests was abnormally abnormal. I think it was the haptoglobin but I'm not sure.

I have Barretts oesophagus, essential tremor and previous colonic polyps. No other medical conditions of note.

I have been told by the haematologist that he thinks I have evolving MDS. I don't believe it because this has been going on for 5 years now.

I would love a fresh perspective and some ideas for a diagnosis,

thank you

Arachnaphob
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Has anyone got any ideas.  I'm tired of this.

Arach
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selmaS
Allentown, PA