Like quite a few new members I have waited a couple of months before my first post.
After a journey of 2 years, multiple blood tests, lumbar puncture, x rays, CT, MRI, PET, DAT scans and a biopsy I was diagnosed with ECD in April this year. I first went to the doctor with slurred speech, and was referred to a Neurologist. I noticed my fitness was also on the decline along with fatigue. I have also been diagnosed with Cerebellar Ataxia. This is secondary to ECD.
At 51 I am in the process of Medical Retirement from the fire service. This was never a club I thought I would be joining. Luckily I had a private Critical Illness insurance policy payout. Like many other members on here I find it frustrating and annoying that only a few people take this very seriously. I’m sure my work thought I was playing the system because I look “OK”. The best way I find to describe myself is, If I was a car on the outside the bodywork is ok, turn the ignition on and the dashboard will light up like a Christmas Tree!! This is an extremely rare blood cancer with no cure. 1-10,000,000 people diagnosed. I am due to start treatment very soon. We have a holiday to Greece next week and my consultant is happy to wait until I return.
Thanks for everything,