Monday, 27 June 2011


It was my regularly scheduled appointment with the MS Nurse today. I had high expectations though. Last month I'd gone for a specific blood test and an MRI.

The hope was to start taking Tysabri which is supposed to be about 40% more effective than the Interferons at preventing and alleviating relapses. My reservation at had always been the risk that goes with Tysabri of PML (a brain disease) - although recent wisdom is that there is only a 20% chance it can kill you, if contracted, it could still leave you more disabled than when you started. The positive news that had started the round of tests is that recent research had determined that if you had not been exposed to the JC Virus in earlier life you can take Tysabri with no risk. So I had the blood test (and an MRI).

The bad news was that my test results were positive for the JC Virus; which meant that I didn't want to to continue with the Tysabri route. I had all but convinced myself that the test would come back negative - so I shed a little tear on my way home. There was further bad news in that the MRI showed 'a few' more lesions than the last I had done back in 2002. Happily my Nurse's computer doesn't have the software to show the scans so I wasn't forced to sit and look at slices of my brain as my Neuro made me do last time, gross!

All in all a bit depressing. For an awful long time my MS was mostly 'benign' (yes, I know, I was lucky!) and the relapses I had weren't too troublesome - a little numbness here and there or an attack of Optic Neuritis. It was only the two really bad ones that lasted about six weeks with the vertigo and total lack of strength in my legs that finally got me through denial and convinced me that I really did have MS; up until that point I still though it was one big mistake!

The problem is now that every relapse comes and goes - but like the frog in the well I go two steps up and one step back; nothing ever quite gets better.

There is another hope in Fingolimod - it has been approved in Europe and is currently going through the NICE process. The problem for the drug, it would seem, is that is costs almost twice as much as I remember being told that the injections cost. More effective than the injections although less effective than the infusion it does provide hope.

Sunday, 5 June 2011

Wheel-chair arrives

The wheel-chair arrived on Friday. So far I've sat in it in the living room and that is about it as I was under house arrest this weekend getting some rest.

It is alarmingly large and doesn't fold up nearly as much as I'd hoped. I'm somewhat doubtful about my original plan of keeping it in the boot of the car.

It will be a good thing though. Every time I'm going somewhere that needs a lot of walking input I don't have to think about it any more.

In  good news, the Optic Neuritis seems to have gradually got better and without me realising it has now gone. Standard six weeks with attempted (failed) steroid intervention.

My prescription ran out this week. My doctor's surgery decided (again) to ignore the stamp addressed envelope I enclosed with the repeat request. This meant that the muscle relaxant tablets that help me sleep through my legs at night ran out and I had a few bad nights sleep. The worst being the one where I got about three hours... and still had to get up and go to work in the morning. The prescription has now been filled and all is well at bed time again!