Tuesday, 16 October 2012

MS Update: Big Decisions


Today I hopped on a boat to see my Neurologist for what should have been a simple and quick appointment of how my drugs are going and them ticking the box to say they are happy for me to keep going with the treatment. Unfortunately I had some pretty bad news instead.

They are not happy with the rate my disease is progressing. I'm relapsing over and over and even though my Copaxone injections have helped a lot and made my relapses less severe, the fact is I'm still relapsing. As soon as I recover BAM. Relapse again. On the outside I am doing remarkably well considering. I only have to use my crutches when I'm having a bad day and although I walk with a really fashionable limp, I still walk as much as my body will let me.
The problem is on the inside. With every relapse there is permanent damage to my central nervous system and brain. When I think about this I realise just how lucky I am that I'm still walking. Even the neurologists are amazed. But the point is all the damage will hit me on the outside, and already is slowly.

I have been advised to try the Natalizumab (Tysabri®) treatment. A monthly infusion of lovelyness to try and stop the progression of the disease. There are so many things to think about with this treatment. If it works it's as close to a cure I could get. But it carries the very dangerous risk of PML. A nasty brain infection that can be fatal.

I wont bore you with the facts, all the info can be found in the link above. This is really just a quick update on the MS side of things and what's going to be on my mind for the coming couple of months. It's a big thing. I'm finding it very strange having to think about the future when I have forced myself not to, and to just live day by day as the future when you have MS is just depressing. I will be on the treatment between 2 and 5 years max and have to take things into consideration such as having more children and the fact that, the longer I leave it, the worse I'm going to get and the overall results of the treatment wont be as good as getting on it ASAP. Sooner you fight it, the better it is for the treatment to try to stop progression...if that makes sense.

Such a huge mixture of emotions today. Early night for me. 

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