[Chirley]

Hi,

Thanks for the replies. I was originally diagnosed with iron deficiency anaemia. I have had 5 BMBs, 3 showed no iron stores and 2 showed normal iron stores. The reason that the haematologists decided that I had evolving MDS was because even in the BMBs with normal iron , they still showed hyperplasia, dehaemaglobinisation and dyserythropoiesis. This along with the low white cell count indicated something more than just the iron deficiency. Also after I had iron infusions the reticulocyte count was expected to increase but it never did. I was told that I must never have another iron infusion because of the bad reactions that I've had to them and last time I developed a little bit of kidney failure as well as the all over blisters, rash and fever.

I have had a couple of tests that have come back positive for bleeding in the bowel but no cause has ever been found. I have had gastroscopies, colonoscopies and capsule endoscopies (swallowing the camera and walking around with it for 24 hours). I have Barretts oesophagus and had some colon polyps removed. Other wise nothing else was found.

Yes I agree with you that 5 units every 5 weeks isn't optimum but this is the only thing he will consider and I don't want to change doctors again and go through all those tests, probes, questions etc again. I would prefer at a minimum 4 units every 4 weeks because it is in that last week that I feel the worst and it's very hard to cope with just daily tasks at home let alone going to work as well. As for the meningitis, it can be viral or bacterial but as I didn't know I had it, I don't know which one I had.

My GP said that he would call what I have "bone marrow failure secondary to iron metabolism error". It sounds like something he made up on the spur of the moment.

Any way there is no point thinking about it. I still have a problem no matter what's causing it and I just have to suck it up and get on with it.

Thanks again,

Chirley

ps B12, folate has always been normal