Saturday, 1 August 2009

Time for an update, including Tysabri number 2

Hi everyone,
I guessed it was about time that I updated you on everything that has happened over the last week.
I am still in my relapse. In fact my hand and arm aren't getting any better at all. If anything I would say it is getting more and more uncomfortable and harder to do things with my right hand.
After speaking to various people, MS nurse, doctors etc. I am at the stage now where we have explored so many different forms of pain relief that people are running out of ideas.
So I am currently back on the Butrans patches that I have used before. They have increased the dose for me so I have 2 patches on at a time. I would like to say that it has improved things dramatically, but it hasn't. I think they have slightly taken the edge off the pain, but the pain is still there. And instead of it being constant severe pain, it is now constant pain with times where it is severe. So I guess that is an improvement of sorts!
I am finding it difficult to control my hand and arm, and by that, I mean it is still quite weak and so doing basic tasks take a lot of energy and concentration. Just little things like brushing my teeth, I don't seem to be able to control the brush so well, or turn the toothbrush. Even pressing the buttons on the remote control for the television, I have to look at where my hand is because I can't feel the buttons under my fingers. Using my iPhone, which is my life line, I have noticed that with my right hand, I am not able to put the required pressure to access applications easily!
It can be very frustrating when a "normal" activity suddenly becomes something that you have to think about to be able to complete it.
I haven't been working since the middle of July. I have to say, they have been very supportive and quite understanding. I had been going in, when the relapse first started, but I was not completely sure if it was a relapse and I wasn't ready to phone the relevant people and ask the question. So I was struggling to complete my shifts and I was getting more and more frustrated with myself. Eventually I was told to go and find out what was going on and I haven't been back to work since.
I went in to see the occupational health advisor on Wednesday. I found it quite helpful and it made me realise that I don't want to return to work until I know I'm not going to be off again. I want to go back and stay back.
But I am desperate to get back to work. I enjoy having a purpose and I like the interaction with my colleagues. Occupational health have advised that I am not fit to return to work yet. Which I guess I knew, deep down, but I was hoping that I would be able to manage it.
My problem is that I push myself. It's not a bad thing, in some cases, but it does mean that I try to do more than my body is able to manage, on a lot of occasions. And I can suffer for that afterwards. My head says that I can return to work but my body is saying no way. And I generally listen to my head - not always the best idea.
Having said that, I am listening to people around me at the moment, and trying to give my body a chance to rest. I want to go back to work and I'm sure that I will be soon. But with my arm the way it is, I'm not sure how much I would be able to do.
I am going to try and get a Doctors appointment on Monday and discuss the situation with them.
One of my concerns is, what if this arm situation doesn't resolve itself? What if these symptoms don't ever improve? I know it is a question we all ask ourselves when a relapse happens and it affects us in ways that are scary.
Generally with a relapse, things are supposed to improve over time. That can be with the help of steroids but I am not having them this time. So I have this nagging doubt in the back of my mind, that my arm isn't going to get any better. If that was the case, then I will need to find a way of continuing on with work and life, with a weak, numb and painful arm and hand. So therefore I will need to just return to work and try and get on with it. A difficult problem that is going round and round in my head!

Tysabri Infusion Number 2
On Tuesday I went down to Plymouth again, for my second Tysabri infusion. I couldn't believe that four weeks had gone by so quickly, but I think my mind was so occupied with the relapse, that I hadn't had time to think about it.
It was a little frustrating that I arrived at about 8.50am but it wasn't until about 10.45am that anyone started to try and cannulate me. This was only frustrating because I know how difficult it is to cannulate me and I knew they would need extra time to do it!
Unfortunately, this proved to be the case yet again. Two nurses tried and failed, so they called a doctor up and she couldn't manage it either. You can imagine how upset I was by this point. It was so painful. My skin is so sensitive, which means putting a needle anywhere near it, isn't pleasant.
The problem is, that apparently I have very small veins and they are buried quite deeply.
The doctor suggested putting my hands in a bowl of hot water, because they felt quite cold. So I did that, and when the doctor returned, she was able to get the cannula in.
We are going to see how it goes next time, because a suggestion has been made that maybe I need to have a line put in, so that I don't have to go through that trauma every four weeks. This was one of my worries before I started the Tysabri, but I don't think the nurses realised just how bad I was. Now they have seen how bad it is and realise that it is not an easy situation to be in.
Anyway, the cannula was eventually done and so the infusion was put through. I didn't have any problems with the infusion itself, although by the time it was done, I had a headache and felt very tired. This mimicked what had happened last time.
I got home and just crashed out for the rest of the day. I slept through until about 11am the next day. I probably would have slept longer, but I had my appointment at work so I had to get up!
I am happy to say, that I feel, so far so good. I haven't really suffered from any side effects, other than the tiredness which tends to last for about 24 hours after the infusion.
I can't say that I have noticed any differences within myself, but after only two infusions, I didn't really expect anything!

So I am just ploughing on, with the hope that being kind to my body and giving it some rest, will aid this relapse into resolving itself.
I am trying to be positive about it all, that, I can assure you, is far easy said than done though!


  1. Hi trouble, can empathise with the hand problem that was how my MS started, I couldn't hold a cup or cutlery and actually collared a passing OT ("Oi, you, can I have a word?")in hospital who got me some extra large holders to put it in. Good job he heard me as I couldn't have chased him as my legs didn't work at the time either (amongst other things ;¬0. I had trouble with things like pegging out washing and still can't do things needing fine dexterity - hence the loss of my career, but you either adapt or it gets better not sure which. My hands feel really hot sometimes and running them under cold water helps.
    Have you tried a TENS machine for pain? for the next Tysabri suggest using a hot compress over intended veins (maybe if they have you waiting for hours again - Paper towel or flannel soaked in hot water would do, or one of those little hand warmer things fishermen use possibly.
    Oh, I've waffled again, sorry but hopefully some of it is useful!
    Jen -x-x-x-

  2. I'm sorry you're having trouble with your hand. I hope it goes away or improves soon.

    I have trouble with small veins too. Someone one told me to drink water before ... they've also done the hot compresses.

    I've only had two steroid iv treatments ... one for 5 days the other for 3. They told me I needed to get pic put in too ... my veins shut down and they run out of places.

    After my coma, some of my good ones are not usable ... mean top of the hand ... which as we all know is bad

    Hope you feel better soon

  3. Hi Amelia!
    I think about you often and am glad you wrote to me. I have wondered how the Tysabri was going for you. Apparently not the greatest. Question is...Are the side affects from the Tysabri or the MS flaring up? Are you going to be able to keep doing them? I hope they figure something out and get you feeling better real soon.