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

    Simon's Tysabri Diary

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    Name Simon


    Age 42 London - Diagnosed July 2007 RRMS Meds Tizanadine, Gabapentin, Vit D, Folic acid, B12 jab every 3months, tried LDN, Baclofen & sativex.

    Hi all,
    My Mum, Dad & Dad's brother also have MS.

    My first symptoms were January 2002 my feet all of a sudden became numb and then a slight foot drop. Just put this down to my job being a driver in London, driving all day without getting out to stretch my legs. This didn't pass so with the history in my family I decided to see a consultant privately who confirmed he was 99% sure that I do not have MS. Happy days. My legs then became numb, then the MS hug and a really itchy chest.

    I became used to these symptoms then I got optic neutris, painful and my vision was black & white in one eye. Just thought it maybe an infection so carried on. That disappeared and then within weeks my right leg became  stiff to the point I could not bend it. I had an appointment at St Thomas' London,  being seen for Hughes Syndrome which mimics MS. It wasn't so was then referred to a vascular surgeon as a pulse could not be found in my legs. Immediately it was noticed something wasn't quite right and was admitted overnight . In the morning a MRI was carried out which confirmed my worse fears. IV steroids were given and baclofen.

    Five years on from diagnosis I have deteriated, mobility is bad from foot drop, to a walking stick, to one elbow crutch, then two elbow crutches and after the last relapse a wheel chair. My treatment was baclofen, gabapentin, tizanadine, Sativex and LDN. I was offered all the different injection DMD's but through stubbornness and a fear of needles I couldnt bear the thought of jabbing myself so I refused them being I was on LDN. After my last relapse and latest MRI results I was then offered Tysabri which I didn't fancy being a wimpy bloke but the realisation knew something had to be done as LDN obviously has not worked for me.

    I am JC+ so my neurologist has only agreed to 18 treatments. When I tested positive my neuro said my levels were too high. I later found out that it's either + or - like black or white. I challenged my neuro as he refused me rebif too as I could not walk 100metres unaided! So her I am, I've done 2 with 16 to go.

    Update 11th January 2013

    Well I've now had 2 infusions and a 3rd a weeks time - wow it comes round quick!

    1st TY infusion went really well, had the pre-checks of urine,bloods,swabs for MRSA and on the day of infusion blood pressure, pulse & temperature was monitored before during and after the infusion, all went well but did feel a little light headed during and for about 2 hours after but nothing untoward. That night I was buzzing and felt quite cock sure about myself and managed to walk 3 steps unaided....well sort of (I use two elbow crutches to walk and if too tired a wheelchair).

    2nd TY was the same as the 1st no problem other than finding a poxy vien!

    As I mentioned I have my 3rd TY a weeks time.  Since starting I Am still walking with two elbow crutches but more confidently & upright. Hopefully, I can see me  (fingers crossed) losing one of the sticks soon. Friends and family have noticed a difference in my mobility and I feel like the old Simon is coming back, still have my numbness and spasticity but definitely easing. I tried a food shop with my wife over Christmas, it was a failure only because the trolley was too light and I couldn't keep up with the thing! So I went back to the car sulking but I do feel good about myself again, confident talking to people and fatigue is much better. I had to replace a tap over Christmas under the kitchen sink, all went well to my surprise but with a few problems! My point is I would normaly loose the plot and not have the energy and patience to continue but I persisted without any trouble. I certainly would of given up and fatigue would of got the better of me. Doesn't mean I'll be volunteering for anymore DIY though!

    I am not taking LDN anymore and will probably resist as I feel TY is working and something good is happening at last. I was told at the start to drink lots of water and keep hydrated which I do and not to expect to see change until 3 to 6 months into TY. Well I am entering soon my 3rd month and can not wait for more!

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