Willie Chrystal - My journey so far.
After returning to the UK from working in the Middle East for a year and a half I ended up in hospital on my return. I went to Saudi in January 2022 to work on a project and around 3 months in I ended up with pain and swelling in my left foot. Only thing that happened is I got mossie bites on the left leg and foot. Long story, it went on for 4 months with steroids and was put down as gout. I got it again before I came back home to Scotland on the other foot, again after mossie bites in Jordan.
When I returned home in May 2023ish I wasn't feeling that good at all and was off work (we run our own company) I had pain in my feet and really low energy. So much so that I passed out one morning and ended up in an ambulance where I was kept in the hospital for 3 days. I was diagnosed and released with "Severe Gout".
We went on a weeks holiday on my release with the dogs. I was fatigued most of the week. I returned to my doctor who sent me direct to hospital from the appointment. Low bloods. I had 1 week in Paisley RAH, was then transferred to the Queen Eliz (QEUH) in Glasgow to the Haematology ward.
I got put in a general ward with daily blood tests, as well as intravenous antibiotics for inflammation and infection. By this time walking was difficult, hands and neck were also stiff. Red bloods were as low as 83, informed that if it hits 80 it will be a transfusion. I didn't get that low. Also got sweats and temperature spikes as well as an odd bout of tachycardia. Had MRIs, CT scans, Echocardiogram, cameras up and down, PET scan. Checked for any diseases that mossies may cause, parasites etc. Nothing.
I got released and had to use crutches to walk for a good few months, diagnosed with Polymyalgia, and eventually went to the Haematologist at Paisley who took bloods after stating that she is going to start from scratch and discard the last 6 months as the age, and symptoms were not indicators for how I was feeling. No consultation, just a letter stating that I had all these big long conditions that I had to Google, just before Christmas. I had never heard of MDS.
Over the last year I have been diagnosed, after a bone marrow aspiration, with MDS, low risk with 0% blasts and continue to have 5 monthly bloods taken. Last results a couple of weeks ago, haemoglobin 139, Neutrophils 1.2, and platelets 90. It goes up and down.
Only meds are Allopurinol and Omeprazole which I am planning to bin. Fatigue comes and goes, still working, get tired going up flights of stairs and still getting the pains in my feet, hands and neck/shoulders, and don't need any walking aids, and haven't for a long time. Not sure if these are linked.
It has definitely been diagnosed as acquired and not genetic and my red cells are not of a good quality, miss shaped. I've done a bit of research and exposure to benzine, copper, lead etc. can be a factor. I worked in aviation for 25 years with the latter 15 being in the Fire Service which exposed me to benzine in the exhausts every day at work. Just a thought. I am coming up for 57 this year, consultant said that at my age this is rare.
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