[Andy S]

Hi, I've been living with sort of dormant MDS for 15 years. At diagnosis in 2001 I was told to read about it myself (I'm a retired GP) and the textbook said "Most people are dead in two years". My local haematologist said there was no treatment, and that was also the view of the local teaching hospital consultant. My platelets and neutrophils were going down in a straight line and were heading towards zero in 2y so I was more anxious than I can remember ever being before.
Mercifully a haematologist on a doctors support forum suggested I contact King's Hospital in London. There I received ciclosporin (which didn't work) then daclizumab (which did) and gradually over several years my readings crept up to relatively normal levels.
Over the last few years I've had three episodes lasting 3-4 days of thick black urine - looking a bit like soya sauce - associated with fever.
I was initially told that this was my abnormal red cells breaking down doe to fever. However, I've had fever without black urine, and this latest episode there wasn't much fever at all.
I looked up "fever causing haemolysis" and couldn't find anything. However there's a lot on haemolysis causing fever, specifically PNH which apparently can develop out of MDS.
I have a well-meaning but rather clueless GP at a practice where it's hard to get through to a GP. I've messaged him asking for either referral locally or to arrange a PNH test, hopefully he'll respond properly to that.
Tied in with everything else I'm in the throes of dealing with a form of PTSD so I'm a bit at sixes and sevens. I have a good therapist.
Anyway that's me!