Who am I
How it all started
I am convinced my multiple sclerosis started in 1972, my bladder misbehaved, I was 18 at the time, I didn’t think about it again. In 1979 I had a major bladder disaster, iblamed the pressure of work and fatigue as the reason for the problem. I had another relapse a few days later then the problem went away. I continued to have tiny relapses sporadically over the next 15 years but being a bloke I ignored them.
In 1994 I visited my doctor because I had double vision. Several months later I was diagnosed with multiple sclerosis. I had no idea what this meant and in those days there was almost no help for people who had been diagnosed. The double vision only affected me when I was physically exhausted. Another issue, the grass was a different shade of green depending which eye I looked through.
At this stage I was still in the relapsing remittign stage but in there were no drugs to reduce progression. I missed that boat.
At diagnosis MS was subject I joked about at dinner parties and was otherwise ignored. In about 2000 I began to notice little irreversible changes in my body, for example when walking over rough ground my left leg started to drag . By now I had secondary progressive multiple sclerosis. Since 1999 the MS has changed me from someone who was reasonably fit, I could do a 16 mile dog walk into someone who cannot walk more than a few yards unaided.
From the waist up I appear to be a perfectly healthy person. I have serious foot drop in the left leg and I have to use a MuSmate. The moment I try to walk you will notice a total lack of co-ordination in my left foot. I am now referred to as a frequent faller, personally I blame the balance. My bladder control is not good, in fact I have to do Intermittent Self Catheterisation (ISC). Just recently I received Botox and that was a huge elephant kicked out of the room. These days I have to use a mobility scooter, its called a Travelscoot or The Trike. A rollator is essential to walk around the house and garden.
SPMS is progressing slowly but inexorably. I had to stop my work as a computer consultant in January 2012. I was on the ASCEND trial 2012 to 2014, it is a double blind randomised trial so nobody knows if its the real thing or not. Tysabri is beng trialed on people with SPMS to find out if it slows progression. I am sure I’m on a placebo but my wife thinks I am receiving the real thing.
I finish the MS-SMART trial in November 2017. It is a 2 year drug trial to investigate repurposing an existing drug to reduce neuro degeneration. Once that process is undercontrol is it worth giving drugs to people with progressive MS that people with relapsing remitting MS receive.
Treatment is gettign better but I always seem to be one step behind 🙁