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

    Richard's Tysabri Diary

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    Richard Wells

    Bio- Originally my background was in financial services working on technical pension issues and running pension funds, but had feeling not the 'full ticket' for a good few months so 'retired' from Pensions financial services in 2009 to find a more low key and simple life in Pet insurance which combined the love of my life Dobermann dogs with my past in finance. For a year I was bumbling along working hard feeling knackered but still walking my dog 7 miles a day between work and his day care.

    Had a 'heart attack' scare in February 2010, which was diagnosed as 'eostophageal spasms' but did get me my first ride in a lit up ambulance. then in the May I noticed a small patch of grey in my right eye , went to the optician who forwarded me to the hospital eye department, within a week the eye was completely blind I had no perception even if the light were on or off.

    The eyesight did come back slowly over about 6 weeks, but due to the blindness the eye had wandered off to the right so had terrible double blurred vision wore a patch and had all the kids pointing to me as I walked about saying 'look mummy a pirate'

    This started me on my diagnosis path, classics included the consultant turning to my partner during his assessment of me and saying 'has he always looked like that?' which then got me looking through old photos to try and pinpoint when in the previous few years my 'good eye' had started to drop with 'ptosis'

    Diagnosis came after Xmas 2010 when the numbness went across my chest from the sternum under the arm and down to half my fingers in the right hand.

    By the June I had 'spastic ataxia' and had a fully developed 'silly walk' that John Cleese would have been proud of and the difficulty of saying to myself 'OK Rich how the heck do you limp with both legs?'

    But all my problems seem to reduce over a period of about 6 to 8 weeks, whatever 'falls off' as I call it seems to come back to about 90% effective, I 'lost a buttock' for a while  so got to use the wonderful line 'yep its true I'm now officially half arsed'

    When my consultant recommended Tysabri to me I was very much of the opinion ' (heck) that for a game of soldiers' having done a brief bit of research and seen all the negative potential side effects.

    But after a week of deliberation, came to the conclusion that I needed to put a break on my relapses, I'd had at least 4 if not 5 problems in 11 months and wasn't getting any better on my own.

    So far I've lived almost the complete reverse of how I used to give seminars and lectures in pensions planning, I used to say 'live like your gonna die tomorrow, plan like your gonna live forever'

    Now I plan like I'm gonna die tomorrow , live like I'm gonna live forever, I've always taken all the negative potential problems and made sure all bases were covered, then when the bad stuff doesn't happen there's a huge relief and I start planning for the next 'test that life throws me'

    Spinal tap was a bridge iIdidn't want to cross but had to do it to get the treatment I wanted, I'd taken all the advice, was ready for all the potential problems........and it was a breeze, fluid taken by a wonderful chap in Southampton who once I got over the fact he wasn't a doctor or a nurse did the procedure with less pain than a blood test.

    First infusion was November 18th ,the mental build up was hard, the pro and cons wizzing round my head not sure if what I was doing was even sane or sensible.......but it was a really good experience, yes OK canulars hurt but the group I was thrown in with made me feel right at home and confident, heck they were all getting their infusions and didn't seem that worried so why should I?

    After the first infusion I had a significant energy boost for 24 hours , but this may have been down to the euphoria of getting through it and out the other side......I had a fairly minor and pretty typical crash into nap land for 4 hours at about 72 hours post.

    Second infusion was 16th December, again the head spent a fair bit of time running round in circles, I'd defiantly felt the slowing down of my body for the last week, and had started to feel 'rib grip' for the three days before I was due my infusion, the burning pain in my right foot was also breaking through which it hadn't done for the month. the second infusion was the one which held the spectre of  'oh most infusion reactions don't come till your second dose' that the nurse had cheerfully told me the previous month, much to the surprise of the lady in the next chair who looked up with a startle saying 'nobody told me that and this IS my second infusion'

    But again all the build up and stress was thankfully for no reason, the second infusion passed pretty much the same as the first with no incident, although I've now concluded that the canular in the arm hurts more than the one in the hand, and the chairs in the treatment room make your bottom hurt like heck after about 20 minutes but your sat there for 2 hours.

    So I'm sat here the week before Xmas, a few days after infusion number 2, I've had two blood tests for JCV and will get those next month, my conclusions so far? Tysabri is scary, possibly the most scary thing I've ever done and I've done stupid things in my time. Is it worth it? Yes definitively even at this point I can feel how much its giving me back and also know what it is holding back, i don't care if I get back the bits I've already lost I think to the more important thing....everything I want to keep.

    Richard Wells EX IFA  ex CGU ,ex FP ,ex UF , Ex Accountant Regulated since I left school 1988 hope this helps identify where i am coming from, dont know where im going to!

    Infusion No.3

    Well thats number 3 out of the way, plus had my consultation with my consultant who gave me the really good news that my JCV test had come back negative so my chances of developing the dreaded PML are now far lower.

    Although my consultant apparently doesn't believe in it i had again suffered the pre infusion drop, the week before i had lost my spastic gate and was walking totally normally for the first time in about 9 months, but on the Tuesday before Fridays infusion the walk had dropped back to its old self and I was crashing each night for 2 to 3 hours of (coma) nap.

    As usual ( well this is the third time) I felt like superman the night after my infusion, talking to my girlfriend about perhaps getting back to the gym and into something like the shape I was in 7 years ago when I was a bodybuilder, Saturday as is normal the rush seemed to wind down and I settled into the slight down that again seems typical for me.

    Sunday brought a new development, I had suffered a little of what I thought might be MS hug before but Sunday I developed the stomach and rib pain from hell, it was like having one of those slender-tone tummy trim machines strapped to my middle on maximum, now I still can't decide if it was an MS thing or a stomach bug (my infusion hospital has Norovirus at the moment and 2 of the 4 children I live with had been off school sick with tummy ache) so I braced my self for the vomiting etc....... but it never came, just 36 hours of pain from the bottom two ribs down like I was doing imaginary sit ups and crunches.......

    I was still tender even on the Wednesday after infusion, but the good news was that my walk had once again returned to completely normal, which was handy as I had a bit of a challenge to face.

    Its worth understanding that I used to walk a lot, I live in a city where its difficult to park so once you have a space you don't want to loose it, typically including walking the dog and to a fro to work I averaged 7 or 8 miles each day plus fun walks at the weekend so would easily be doing 50 to 60 miles each week.

    By the time I was due to start my infusions I really was wondering how long I would be able to keep going without sticks and more difficult that that was the fear of trying to do something I had so long taken for granted.

    I hadn't walked properly my old distances for the best part of a year relying on lifts all the time, and I was at the point of actually being scared to even think of a walk more than 500 yards, one cos of the pain and fatigue and more the dread of finding I really couldn't beat this crappy MS thing any more and I was going to have to accept what life had planned for me.( if you have always relied on will power and determination what the hell do I do when that stops working?)

    Any way I had no lift available for me today Wednesday after infusion, so would have to both walk back from work 2 miles then walk to get my dog from his sitters another 1.75 miles down the road and back, a total of 5 and a half miles, what I used to call a breeze but only 8 weeks earlier I'd been in tears to think about doing a 750 yard walk not knowing if I'd be able to make it back.

    I did it, total time was under 2 hours and I was and as I type this 2 hours later pain free and totally human.

    Thank you Tysabri for giving me the things I used to take for granted.

    My only pause for thought now is I am such a friggin lucky beggar, ok I have MS and it was looking pretty grim, but now I have this wonder mouse juice and all seems to be coming back for me, but I am one of the lucky 1%, it makes me worry and feel guilty 99% of MS sufferers don't have the chance to have Tysabri, I don't know what the answer is but it doesn't seem fair that they suffer sometimes for years and probably wont get the same chances that I have been lucky enough to have.

    Well that's me for another month.

    Richard Wells

    © Multiple Sclerosis Resource Centre

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