Friday, 10 July 2009

Tysabri Tales!

I am so sorry to everyone for not updating my blog for a while.
I know you are all wondering how things went last week with my first infusion. So get a cuppa, sit back & read on!

We got to the hospital by about 9.15AM on Tuesday 30th June. It was in the planned investigation unit. I hadn't been back to that unit for a few years. I had been there twice in the first stages of my diagnosis, for the tests and some steroid treatments. A nurse that I remembered, was still there and remembered me!! We got booked in and did all the paperwork. I didn't have to wait for a doctor to come and give me the OK. I have heard that some other people have to wait for a doctor before they can have the treatment. But I think, because we have an MS nurse in the building, she is able to give the OK.
So it soon became time for them to put a cannula in my arm. I did warn them I was difficult! After 3 attempts, we finally had the thing in my arm, but it was on the inside of my wrist, not an easy place!
I started the infusion at about 12pm. I had been able to talk to the MS nurse first, but there wasn't a lot more that I needed to know by then, I think we were both at the stage of just getting on with it!
So the infusion went through. It didn't hurt, although my wrist was a little bit sore from the cannula. Then I had to wait around for an hour afterwards to make sure I didn't feel strange! I was getting the start of a headache, but apart from that I was OK.
Martin drove us home, which turned out to be a good thing. About 15 minutes after we left the hospital, I was fast asleep. I don't just mean a quick nap, I was out of it. There was no way I was keeping my eyes open.
We got home by about 3pm, had a bite to eat and then, yes, I was asleep again. I woke up again at about 7pm and decided that I ought to just give in to it and go to bed, so by 8pm I was in bed! I slept through until about 12pm the next day. I got up then but to be perfectly honest, I could have stayed in bed for the rest of the day. I wanted to get up, so that I had a chance to be able to sleep that night.
I had some dinner and went to bed on Wednesday night but about half an hour later I was up and being violently sick. It wasn't a nice experience. After I had finished I went back to bed feeling quite weak. I rang the MS nurse the next day, because I just didn't know if it was something I should be concerned about or not. I explained what had happened and my concerns about whether it was connected to the Tysabri. But we determined that it was more likely to be down to the tuna I had eaten for dinner! Food poisoning, the same week I start the Tysabri - typical eh?!!
I felt pretty weak and feeble for a couple of days but I had stopped being sick, so I think it was safe to say that it was due to food poisoning.
I didn't go back to work until this past Monday because I just didn't feel strong enough. That's another story though because they are now going to be doing an investigation at work, into my absence. If you have so many instances of absence in so much time then they have to investigate it to see what they can do to help. I understand that they have a business to run and so they have procedures to follow but what I don't get is where does common sense come into all this. They took me on knowing that I had MS, so where is the understanding? I feel at the moment that I have to go in for every shift because otherwise it's all going to go against me.
But when you have MS, life isn't that easy.
I will have to have a chat to someone and talk about my concerns. I don't want them driving me out of my job because of a condition that I can do nothing about. The job is too important to me and I have worked too hard to get everything as it should be, for me to give it up now. It is something that I need to be doing because it gives me a purpose, it gets me out of the house and talking to other people and it allows me to contribute to my relationship, financially.
So on the Tysabri front, it's just over a week since I had the infusion and I am feeling alright. I don't feel any different, there has been no miracle cure, but I also don't feel as though I have had any negative affects from it. My next appointment is made for July 28th, so I guess it's just wait and see!
We went for a day at the cricket in Cardiff yesterday, but I will write a separate piece about that experience!
Today has not been a good day though.
Throughout the week, I have been getting some strange pain and sensation in my right thumb. I didn't really think that much of it until today, when I realised that my right arm has started to go numb in a big way again. It is exactly the same feeling I had in March, when I had my last relapse. My hand and the underside of my arm is feeling really strange. It is the horrible, painfully numb sensation that I have had before. I am just waiting to see if it spreads throughout my entire right side and up into my head like it did in March.
I will have to wait until Monday to speak to the MS nurse but that will also give me a chance to see if it is going to persist.
My immediate thought is relapse, but so soon after my last one and I've just started Tysabri so what does that mean?
I am so confused and I'm not ashamed to say that it is scaring me quite a lot. If it's not a relapse, then what is happening, if it is a relapse, well that's not good news either.


  1. Hi Amelia,
    Too late to do any more than send you lots of love.
    Big hug.

  2. It is scary. It is nasty. Only thing to do is be positive- at least you are smiling as the manure piles up over your life.
    Herrad had about twenty years of MS undiagnosed and I am glad we just thought it fatigue or a torn hamstring. Getting used to a changed and unwanted future has been hard for us but now we can live with it we can enjoy life by the moment. Herrad does sometimes cry from sheer terror. I hold her till she can put it back in the box. Then we start talking about breakfast or the dogs or the cricket.
    MS never takes one track so it could just decide not to do any more to you for a while. I hope that is so. If it isn't then make the changes of expectation you need to: use every ability you have and do not waist time and strenght chasing those you have lost. Herrad has learnt and grown as a person as her body has been diminished. You too have a lot to offer the world. You will remain who you are.

  3. I have worked too hard to get everything as it should be, for me to give it up now.

    Oh, Amelia! You aren't giving it up. It is being taken away by forces beyond your control. When MS progresses, it turns worlds upside down. It takes everything you thought you knew about yourself, your relationships, and your worth, and makes history of it.

    I'm not saying you shouldn't fight it. I agree completely with Richie. Stay focused on the bits that are working and use them to their fullest -- including your noggin and your naughty bits. Today's joy will be tomorrow's fond memories.

    You'll know in a few weeks if you are experiencing a relapse or progression. I'll be rooting for relapse.