So on Monday after my diagnosis things just kind of sped up. The MRI showed a lot of activity since the previous scan and treatment was to be started as soon as possible to try and stop any further damage being done.
My MS nurse is great, I love the way she is completely straight with me, very ‘this is what it is and this is how we can deal with it’ her honesty doesn’t scare me about what I have – it’s practical, I prefer that.
We have decided to treat using Tysabri – This is given by a drip once every 4 weeks, it’s going to help stop the movement of the white blood cells across the blood – brain barrier into the central nervous system which should help prevent nerve tissue damage. The benefits can be reduced progression of the disabling effects of ms by over 60% and decrease the number of ms attacks by over 80%. This was more than I was expecting from any treatment and the % is much more than I could have hoped for.
Crazily i’m booked in to start treatment on Friday! Diagnosed Monday and treated by Friday, this is moving fast, but the longer we wait the more damage is being done and a relapse could cause huge irreversible damage, so as I was told by the ms nurse when I questioned how quick it was starting ‘why would we wait?, your young and active, let’s keep it that way!’
I went up to visit the ward where I’d have the treatment, it was nice and not what I was expecting at all. It was all big comfy chairs, TV to watch, people reading books or magazines and just chatting with each other. I suppose I thought it would be people lying in a bed looking ill, i’m actually looking forward to a couple of hours each month to sit and relax just me 🙂 no kids or house work to do – i may even get to read a book!
I was all set for Friday but my MS nurse rang yesterday to say my blood test showed my liver function test was quite high, I had to go back and have my bloods repeated this morning but thankfully my treatment can still go ahead as when it was discussed they had decided my need for the treatment was greater. I just need my bloods done again in 2 weeks and ill get an ultrasound on my liver soon too.
I wish they would stop testing me for things as they seem to find more and more things wrong with me – that and the fact my arms look like a junkies now 😦