Slowly but surely the weeks trickle by. Only another 12 weeks until the trial finally finishes. That’s another 3 visits to the Royal London Hospital.
Even at this stage I don’t know if I’m receiving the real deal or a placebo. It is a random double blind trial. I suspect that I am receiving the drug but not totally convinced. After 108 weeks I will have the option to be on Tysabri the real thing or stop completely. At least I am over half way there
There is one rider to be considered, the chances of getting progressive multifocal leukoencephalopathy (PML) What ever way you look at it PML is not good news. It’s only a risk if you are JC positive. I am JC +ve but as yet I do not know how positive I am. There is a risk assessment put together by Professor Giovannoni. At present I do not know my ‘titre’. Yup its complicated possibly boring but also potentially very nasty, especially for Barby.
I undergo tests every 12 weeks, here’s what happened today. My Extended Disability Status Scale (EDSS) is still 6.0, that is very good news. I managed to walk 197 metres in 6 minutes, last time it was 228 metres. I do not know the time for the 25 foot walk, extenuating circumstances as you will find out. The 9 peg test was about 30 seconds whether it was with my left hand or right hand, that’s the usual time. Also a huge number of questions where I had to assess how MS was affcting me.
So that’s the bare bones, so what were the extenuating circumstances? It isn’t pretty reading but such is life wih MS. I started to do the timed 25 ft. walk when I realised I needed a pee. I should have stopped and gone straight to the loo. Instead stupid pig-headed me did the two 25 foot walks, then I picked up a catheter en route to the loo. By the time I got there it was too late, my bladder had let me down again.
Trousers were wet but at least I was amongst friends. There were people who had been there, seen the film and got the T-shirt. Also the medical people running the ASCEND trial understood the problem. Dr Giles Elrington who was the blinded doctor was very sympathetic.
Another one ticked off
It all went without a glitch apart from the aforementioned. I met some other people also doing the ASCEND trial. I was back home by about 4ish but then I did have to get up at 6.45 in the morning. I washed and changed my trousers and felt much better. Tomorrow its another MRI scan but that’s nothing to worry about.