Sunday, 22 November 2009

Tysabri Number Six

This week was Tysabri number six.
I am pleased to report that it went better than it did the last time, although it didn't go without a hitch............unfortunately!
I arrived at my allotted time, but had to wait, which is becoming very normal!
There are a group of about six of us, who all go down to Plymouth on the same day. The difference between myself and the others, is that because I have had the portacath fitted, I have to wait for a registered nurse to be able to sort out my portacath, where as the others can get their cannula's done and away they go with their infusions. I'm not complaining though, because I am becoming more and more convinced that this was the right way to go.
Emla cream is a magic cream that nurses put on the back of children's hands, when they have to put needles in, so of course, I have asked to have this cream put on my scar before they put they needle in! It does work though! I realise that I have altered sensations all over my body, but it always surprises me, all the different ways it affects me.
Unfortunately, this time, it took two attempts to get the needle into the port. The first time, it didn't go in properly and when the nurse tried to flush it, nothing happened. So she took that needle out and tried again. This time it went straight in, and hit the back of the port. It flushed well, so she hooked up the infusion. I lay back straight away, this time, because last time, when the infusion went in, it hurt like hell. I really thought they might have to stop it last time, but it didn't happen this time, so I think I may have sorted that out.
The main issue I had this time, was that it virtually knocked me out, almost as soon as it was administered. I really struggled to keep my eyes open. It was very strange. But the good thing about that, was that the time went very quickly!
Once it was finished, Martin was able to drive me home, where, I just crashed out for the rest of the day.
I still can't say whether it is having any affect or not. But I need to keep giving it a chance!
I am still experiencing this horrible flickering of my nerves all over my body. It is such a strange sensation and one that really causes me quite a lot of pain. It is very disturbing.

Some good news though, I have finally got an occupational therapy appointment on Wednesday morning! The lady is coming to the house and hopefully, we will be able to talk about my need to have a wheelchair, but I am also going to talk to her about our bathroom. I want to see whether we will be able to get our bath taken out and a double shower put in, so that I can put a shower chair in there and I won't be so reliant on Martin to help me with a shower. That isn't to say I wouldn't still need his help with washing my hair etc, but it would make me feel just a little more independent.
I really want to sort out a wheelchair though, because I think it would just take the pressure off me. I still think I would push myself a lot to walk places, but when I am in situations where there is a lot of walking involved, it will give me the choice. Then it's up to me to make it eh?!!

So, I am looking at the week ahead. I can't believe we are into the last week of November.
It will be December very soon, which means CHRISTMAS!!
Martin and I get very excited about Christmas! It is such an enjoyable time of year, and we do our best to enjoy it as much as possible.
I cannot believe that another year is nearly passed and when I look back over the passed year and see how much as changed for Martin and I, it is quite bizarre. But I would like to think that we are in a better place now than we were this time last year - long may it continue!


  1. Do you exercise or sexercise within 72 hours of your infusion? While Tysabri helps "mobilize your stem cells", pumping up your bloodflow rates helps.
    More at
    Check with your doc about exercising, sexercising, & your Tysabri infusions.

  2. Hi Amelia,
    Good to hear your 6 infusion went well.
    Thinking about you lots.

  3. Hi, I found your blog through Erin's MS blog. I was diagnosed with MS in '05 and just had my 13th Tysabri infusion yesterday! I love Tysabri. I have been on all the other MS drugs and can't tolerate any of them. I blog about it (and lots of other thoughts) and I think it's great to read other people's experiences of having MS and being on Tysabri.
    Good luck!~Dusti Pearson Harlan