My road to an MS diagnosis
When I had my first MS attack, work was very stressful and I was under a lot of pressure.
I remember working late one night and feeling stiff and tired. When I woke up in the morning my lower body felt weird and my skin felt numb. I didn't say anything to my wife, Ally, as I assumed it would just go away.
We went on holiday but the feelings got more extreme. I lost sensation when I went to the loo and my feet began to feel very odd. It felt like my shoes were too small and my toes were locked together.
On the second day I mentioned it to Ally and we agreed I would go to see our osteopath. I thought I had trapped a nerve. I wasn't in any pain, so I wasn't particularly concerned.
Reaching a diagnosis of MS
When I saw the osteopath, he listened very carefully to my symptoms and sent me to A&E for an MRI scan. He said I could have a serious problem with a disc and could end up paralysed if I ignored it.
Being a typical man I decided I knew best and booked an MRI scan at a private hospital a few days later. Nothing on the scans concerned my neurologist.
A few weeks later the sensation had receded from my legs and gone to my torso and down my arms. I was left with numb hands and feet. I went to the GP who said sometimes we don't know what causes these sensations. He told me to just get on with my life, so I did.
But over the course of the next year I slowly began to feel tired doing simple things like walking. Towards the end of the summer I went to see another GP who listened to the full story and referred me to a neurologist. By the end of that year I was told I had relapsing remitting MS.
All I knew about MS at the time was that people ended up in wheelchairs. I was loaded down with leaflets and I booked to see an MS nurse, an MS consultant and another doctor in charge of the disease modifying therapy (DMT) programme.
By early 2016 I was on Tecfidera and I became a member of the MS society. What a ride...
Music and MS
I have been writing and recording my own music since 2004 and in 2009 I released an instrumental album. It took me three years to write and record in my spare time at home.
Once MS hit I found music was a distraction from all the thinking and worrying. During my first MRI scan I remember listening to all the strange noises the machine made. The first piece of music I wrote post-MS was thought up in the MRI machine. It’s called ‘In the Machine’.
now teamed up with a singer/songwriter from the US, Susan Fidler. We’re working on a collection of original songs for a new album and we’ve uploaded some songs to YouTube.
Because my hands are numb and tight, MS has affected my guitar playing. More physical activities are out of the question for me, but I can still write music and that makes me happy.