Today is Myelodysplasia Syndrome Awareness day so I thought I’d tell my story to diagnosis.
A year ago I got hyper. Really really hyper. To the point I decided I was going to South Africa in the new year to see my favourite band. So I ordered a new passport, booked my plane tickets and was just about ready when bamn!! I got ill.
On 4th January I had bloods done at the hospital prior to a drug infusions and on the Monday I got a phone call to say my platelets had dropped to 55!! Nightmare ensued with multiple phone calls to multiple consultants about what to do.
Should I be started on steroids, be admitted to hospital, what course of action should be taken. A referral was made to Haemotology and I was told I couldn’t fly so my holiday was cancelled. After 30 years I should have learnt not to get hyper as I always get ill.
A week later my platelets dropped to 27 and having slept through a million phone calls I woke to mum coming in the front door and telling me they wanted to admit me to hospital to keep an eye on me. 1st year doctors came to my hospital to take down my medical history and left looking scared but with the one request from me to not put me on steroids as I was due to see the Oxford haemotologist later that week.
At 10pm a nurse came in to give me steroids as the doctors had not paid attention to my one request. They also gave me tranexamic acid. The next day I saw a variety of consultants and requested they discharge me so the following day I could go and see the Oxford haemotologist I had been urgently referred to. A visit from the Basingstoke haemotology consultant who agreed to my discharge on the basis I continue on the steroids and tranexamic. So happily I was discharged to Kintbury with Minnie ready for my trip.
I then saw Dr.Quek at the Churchill hospital in Oxford and as I already had a diagnosis of Ataxia pancytopaenia it was suspected I had Myelodysplsia Syndrome (MDS) so was sent for a Bone Marrow Biopsy for confirmation.
Having had a bone marrow biopsy before I knew it was going to be painful but their was another guy their who made it unbearable as he didn’t want to go home but wouldn’t shut up about his diagnosis. With mum waiting in the hall the doctor stuck my hip with a needle and started getting all the bits he needed to send off to various labs.
A few weeks later it was confirmed I had low risk MDS and needed constant evaluation to check my levels. They’re currently 180 so I’m happy.
I have also met a haemotologist in Basingstoke who specialises in MDS so I have a local contact and am carrying on as normal although some days the fatigue gets immense.
Once again the doctors can’t predict how the MDS will progress so I just have to wait and see. MDS normally affects those over 70 and my doctor said because of that it can’t be guessed as to whether it will get worse or stay the same.
If you want to learn more about MDS then do please visit https://mdspatientsupport.org.uk
How Rare? 