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

    Eddie Clark's Tysabri Diary

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    Eddie Clark

    Heres my story so far !
     
    My name is Eddie Clark and I'm from Lincolnshire.

    Way back in 2004 I noticed that the coordination between my hands was not right (I was playing guitar). It was bizarre !

    Over the next few days my speech became slurry, and I lost the ability to use my left leg with no control of my knee. My doctor referred me to see a neurologist (six months between the two visits as in his words it wasn't desperately urgent). Saw the neurologist in September 2004 with an MRI in early 2005 that showed demyelination. I fully expected him to tell me it was an unexplained thing and that I could toddle off and get on with my life, but No, the evidence was there ! MS. I was numb, vacant and scared.

    A visit to Shannon, my MS nurse led to me starting beta interferon mid 2005 and I'm still on it.
     
    I've had about six or seven relapses affecting both limbs and function to a lot of other things since, about eighteen months ago I lost motor movement to my left hand, and it's returning but like most things not to anything like its original functionality.

    After my last relapse in September 2009, which affected my right side, I visited my neurologist who reviewed my medical history for the past four years. his conclusion was that the beta inteferon had not been as successful as he would have liked at slowing the symptoms and relapses.

    With that in mind he discussed with me what he considers to be the next step in active RRMS treatment..............TYSABRI !

    I had another MRI in December 09 and will visit the neurologist in February 2010 to discuss the findings and starting on this new drug.

    Thats where I am at the moment, more to follow.

     Eddie Clark  

    Update 21st December 2011

    HERE YOU GO !!
     
     I had another MRI in December 09 and would visit the neurologist in February 2010 to discuss the findings.

    Then in  January 2010 and I received a Neurologist's letter informing me that the MRI performed at Lincoln was not able to give the detail required for clinical assessment ( I can't understand it ?, I was Still and asleep throughout LOL ).

    A further MRI was scheduled in Sheffield (a better machine, neoro's words) in late March.

    My MS nurse pushed for the results and as a result I got a confirmation from my Neuro that I'd got enhanced lesions and met the criteria for Tysabri infusions.

    Although different dyes were used during both MRI's I was sick within a minute of being administered and so having an infusion was getting me very nervous.

    Before being allowed the new treatment we had of discussion about side effects and the small matter of the letters PML.

    The one pitfall of recieving what could be a major boost to my quality of life would be yet another sword of damacles (the other one being relapses) in the form of Tysabri awakening a virus that could be lying dormant in me that could cause brain tissue inflamation and possible death. The fatality rate given at the time was 1 in 600.

    I can't say i didn't have slpeepness nights thinking about this before making my mind up. I wasn't going to slip away and become another MS statistic relapsing along the way to extremity failure. No f**rget it, I want my quality of life back.   I signed the waiver accepting the PML risk.

    On the day of my first infusion I visited the medical day unit in Lincoln Hospital where a collection of patients were receiving all sorts of drips and infusions from a group of happy and team orientated medical staff.

    My MS nurse canulated me and checked my vitals and it was a period of three hours from arriving to receiving the infusion and being able to leave after a period of observation.  The whole day was relaxed, professional and organised. The drip went in fine and having not to worry about Injecting every other night is a godsend.

    My workplace granted me permitted absence whenever I needed it and so the best thing I can do now is report back after my third infusion when I'm told the infusions start to take effect.
     
    INFUSIONS TWO AND THREE
    My partner came with me for the first three infusions but after we'd worked out that I felt OK to drive the twenty miles home and return to work she let me be a big boy !

    There were normally four in our group in any one sitting and we were introduced to our infusion nurse Dominique, who has been an absolute pro with the care I've recieved. Its my opinion that having not had the battering of relapses i started to feel better with better energy levels.

    INFUSIONS FOUR TO TWELVE
     The joy of not having to deal with relapses has sunk in. I feel better and have not been fatigued since before i started infusions. Everyone in the group agrees that we've all benefitted from this drug. however the PML thing started to get clearer. A new test was going to tell us if we had the JC virus or not.

    We were going to learn if our chances of PML were going to increase (this happens as you move towards an into the second year of treatment) with a test telling us if we had the precursor for PML. this was a thought I'd put away in a small corner of my mind, but when considered against the rude health I was in the outcome of any test would not stop me taking Tysabri.
        
    INFUSIONS THIRTEEN TO TWENTY (PRESENT DAY)
    I can see that all the group have benefitted from twenty months of Tysabri, One of the MS'ers Rachel always looked tired and withdrawn but recently she's been like a jack in a box.

    Jilly has taken over dispensing the drug and we are all on firstname terms with all the superb staff in the medical day unit. During the last year my MS nurse Shannon Gaughan has been receiving treatment for Cancer. This puts my small problem into perspective.

    Get well soon.

    First Infusion
    I had another MRI in December 09 and would visit the neurologist in February 2010 to discuss the findings.

    Then in  January 2010 and I received a Neurologist's letter informing me that the MRI performed at Lincoln was not able to give the detail required for clinical assessment ( I can't understand it ?, I was Still and asleep throughout LOL ).

    A further MRI was scheduled in Sheffield (a better machine, neoro's words) in late March.

    My MS nurse pushed for the results and as a result I got a confirmation from my Neuro that I'd got enhanced lesions and met the criteria for Tysabri infusions.

    Although different dyes were used during both MRI's I was sick within a minute of being administered and so having an infusion was getting me very nervous, however the whole day was relaxed, professional and organised. The drip went in fine and having not to worry about Injecting every other night is a godsend.

    My workplace have granted me permitted absence whenever I need it and so the best thing I can do now is report back after my third infusion when I'm told the infusions start to take effect.
     
    Thats where I am at the moment, more to follow.
     Eddie Clark  

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