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    You are here : Home » Get Involved » MSRC Interactive » Tysabri® User Diaries » John W's Tysabri Diary

    John W's Tysabri Diary

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    John W

    Age: 30

    First Diagnosed: 1997- Relapsing-Remitting

    Main MS symptoms:

    Previous Medication: Beta Interferon -   Avonex - Sept 07-Sept 08 (Had to stop taking as it  was causing depression and mood swings)

    Steroids (6-7 times)

    About Me: 
    The picture above was taken  in February on my 30th birthday, a week after being discharged from hospital following the most horrendous relapse I’ve had to date. If you’re wondering why it says Finlay on the cake, it’s because my eldest son (aged 8) shares my birthday! I also have another son, Felix, who has recently turned 4.

    Up until around 5 years ago my MS didn’t really cause any major problems for me but my condition has started to deteriorate since then. At the time of diagnosis (aged 17), which was shortly after the death of my dad, my doctor recommended that I didn’t look into the condition to avoid distress. I gladly took his advice and turned a blind eye to MS, carrying on with life. This didn’t always prove easy as my condition gradually worsened.

    Pretty soon I had to abandon art college and my initial plans for the future due to the numbness in my hands and also left my bar job as working on my feet every night until 2am was just too much. I now work as an advisor at the Job Centre but have been off since February. In this time, my neurologist suggested that I might want to try Tysabri as Beta Interferon hadn’t suited me at all. I had my MRI and waited for what seemed like forever (about 2 months) for the results to make it to my neurologist until I finally got the call I had been waiting for which was thankfully a yes.

    Update 29th November 2011

    I've now been on Tysabri for 2 years (!)- on infusion #31. I discovered after a blood test that I don't have the JC virus which has been shown to increase chances of contracting PML so that was a huge weight off my mind.

    Am still doing well with no relapses and that's the main thing.

    I've not really had any major improvement in mobility but having been stable for so long I feel like I'm in a place where I can start doing more which is good.

    2nd Infusion
    Well, I had infusion numero 2 yesterday and all seems to be well so far, it definitely hasn't hit me like the first one. After the first infusion I have to say that I felt pretty awful (extreme fatigue and a foggy head as well as the usual mobility problems and the rest!) for a week after- so bad that my wife got paranoid that there was something going wrong and had to call the MS nurse for reassurance. I was tested for water infections but all came back clear so I think it must have just been my body adjusting to things.

    In the three weeks following that I have had a slow but steady improvement to the point where I actually think I am better than I was before taking it. It feels strange to say that and I'm always a bit cautious to get excited about any improvement in case things all come tumbling down again. I know that sounds negative but I've had so many ups and downs with ms, like I'm sure you people reading this have too. But EVERYONE has commented on me seeming a lot more 'with it' and I am just feeling more human again if that makes sense!

    My wife thinks it is having quite a dramatic effect- she reminded me that just 5 weeks ago, I had to and lie down after chopping up 2 carrots it exhausted me so much, we had to get a mobile hairdresser to come to the house because I didn't have the energy or mobility to get out and I could barely hold a conversation I was just so tired. Since having the first infusion I am cooking meals without having to go and rest afterwards, helping out with the boys and round the house and just generally enjoying life more- I even seem to have regained a sense of humour (not sure where it went but it did!), much to my wife's relief/dismay. I want to get back to work fairly soon but I am hoping my mobility might improve a little before I go back because at the moment, I would still need to use a wheelchair to get around. Watch this space!

    First Infusion: 11th May 2009

    A very strange experience but so far so good.

    I had been really apprehensive a few days beforehand due to worries about PML but after a few sleepless nights I decided to just do it and really wanted to get it over with as soon as possible!

    The staff at the hospital were great and watched over me the whole time to make sure there were no adverse effects.

    It’s now the following day and so far, I haven’t noticed any change apart from extreme tiredness and a headache. At the back of my mind I think I was hoping for some sort of miraculous change to occur straight afterwards but it’s such early days so I know it’s silly to feel disappointed already!

    I’m hoping tomorrow will be better but will keep you posted.

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