MDS 20y, episodes of black urine, a bit shook up
 

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!

Andy,

Congratulations on your long survival with MDS!

It's interesting that you were treated with daclizumab. It's been used to treat aplastic anemia, and I haven't heard about its uses for MDS. But it helped you, and that's great.

Dark urine isn't always present with PNH, but it's definitely a symptom for many PNH patients. Hemolysis may occur primarily overnight, leading to dark urine in the morning.

It's important to get that PNH test. If you have trouble arranging it, you might be able get advice from Dr. Morag Griffin, a PNH specialist at St. James University Teaching Hospital in Leeds.

Thank you. I may just contact her anyway. PNH is rare and there may be other reasons for my haemolysis.

My heart goes out to you, dear Andy.

My mother is suffering from severe aplastic anemia. The horse-ATG medicine has not yet proven to be successful. She also has a spinal infection from low neutrophils acquired after a bone marrow biopsy. She is on an antiobiotic drop for two more weeks. It lowers her blood counts, requiring more blood and platelet transfusions. Her neutrophils are down to 200-300 because of it, too. Now she has pelger-huet cells in her blood test results. The antibiotic causing such a low white blood cell count is behind this, I believe. She has 12 more days of the drip, so we just have to hang tight. Antibiotics can wreak havoc on the body.

Don't let statistics and google searches scare you. I ask you to practice Qigong to help heal yourself. It is super powerful. Please go beyond the fear and the shock. You can go beyond this illness. - I assure you.

I just wanted to say that when aplastic anemics and MDS sufferers develop PNH, it would be secondary PNH, which is usually just treated with folic acid. I could be wrong, but it's not as serious overall as primary PNH.

Much love and healing to you!

Matthew:)

Daclizumab at the time (2004) was used in AA, and as I had hypocellular MDS the clinical team thought is was worth a shot. Very glad they did!
GP rang today - he'll refer me to the haematologists at Leicester so there's hope.

Matthew42 - thanks for your supportive message. In the bleakness, human contact is a lifesaver!

Update
 

1) Episodes of black urine and fever - GP has agreed to refer me to the local haematologist. So bone marrows I guess as they'll want to do their own work up.
2) Complex PTSD or whatever it is - I had an hour's video assessment interview with a very experienced GP via Practitioner Health. It was the first time I'd ever told (most of) my story to anyone in one go. I was appalled when I heard it spoken out, part of my journey. She took her assessment to her MDT who agreed that it was too complex for their service so to engage with the PMHT locally and expect a proper psychiatric assessment. I've had a couple of brief chats with the CPN and I felt he was on the right wavelength.

All in all, it feels like we're getting to grips with things and I can receive the medical/psychiatric help I need rather than being my own GP/therapist.

Dear Andy,

Thank you for the update.

I sincerely wish that you receive the right medical and psychiatric help.

You will get better somehow. I think you are already making improvements on a mental level. There are also a lot of natural treatments like Qigong that might really do wonders for you.

Wishing you much love and healing.

Matthew