My journey started three years ago. I had a bad fall which then resulted into a slight limp and after a visit to my GP I was referred to a physiotherapist who thought I should seek a specialist, which I did and he thought I may have a trapped nerve.
I have decided I am not going out of this world without giving something back. I will leave my body to research.
After numerous tests, MRI scans, bloods etc which went on for 18 months, I was finally told I had a rare disease called hereditary spastic paraplegia (HSP). I felt numb. My partner had to relay what had been said by my neurologist as I felt I was there in body but not in mind. We were told the disease was not fatal, but would be a slow progress as it only moved in decades. I felt devastated knowing that one day I would be in a wheelchair. I have always been independent, fit and active and extremely hard working - it was such a life-changing shock.
As time went on my disease rapidly deteriorated. I knew something was not right as my symptoms did not fit the HSP diagnosis. After researching the MND Association website I was convinced I had MND. I went to see my neurologist and told her what I suspected and she agreed. I had a test which confirmed that I have MND. This was 10th February 2011.
I am aware that any form of neurological problem can be difficult to detect, but to be misdiagnosed with a terminal disease is devastating.
I have lost the use of my arms and legs but most of all my independence, which was priceless. But I have decided I am not going out of this world without giving something back. I will leave my body to research in the hope that one day I will have contributed to helping other sufferers with this cruel, painful disease.