Multiple Sclerosis Resource Centre
  • Home
  • About MS
  • MSRC Services
  • Get Involved
  • MS Research News
  • MSRC Groups
  • Useful Resources
  • Welcome To Josephs Court, MS Centre Of Excellence
  • Advertising
  • E-Newsletter
  • Contact Us
  • Cookie Policy
  • Investor in People
    You are here : Home » Get Involved » MSRC Interactive » Tysabri® User Diaries » Simon's Tysabri Diary

    Simon's Tysabri Diary

    A A A
    [Print this page]

    Share |

    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!

    Related Items
    Ade's Tysabri Diary
    Amy Kristine's Tysabri Diary
    Annaoc's Tysabri Diary
    Cheryl's Tysabri Diary
    Chris Dawson's Tysabri Diary
    Christine B's Tysabri Diary
    Christine's Tysabri Diary
    Claire's Tysabri Diary
    Dave Parker
    David's Tysabri Diary
    Deborah Penny's Tysabri Diary
    Diane's Tysabri Diary
    Donna T's Tysabri Diary
    Eddie Clark's Tysabri Diary
    Emma's Tysabri Diary
    Ewizabeth's Tysabri Diary
    Fabiola's Tysabri Diary
    Georgina's Tysabri Diary
    Jan's Tysabri Diary
    Jayne's Tysabri Diary
    Jill's Tysabri Diary
    John W's Tysabri Diary
    Kara's Tysabri Diary
    Karen's Tysabri Diary
    Kate's Tysabri Diary
    Kirsty's Tysabri Diary
    Krissie's Tysabri Diary
    Laura's Tysabri Diary
    Lauren's Tysabri Diary
    Lisa's Tysabri Diary
    Mandy's Tysabri Diary
    Martha Rogers' Tysabri Diary
    Melissa's Tysabri Diary
    Michelle's Tysabri Diary
    Natasha's Tysabri Diary
    Neil’s Tysabri Diary
    Nicky's Tysabri Diary
    Nutty's Tysabri Diary
    Patti's Tysabri Diary
    Paula's Tysabri Diary
    Richard's Tysabri Diary
    Richard's Tysabri Diary
    Sarah P's Tysabri Diary
    Sarah's Tysabri Diary
    Shane's Tysabri Diary
    Sonya's Tysabri Diary
    Stuart S's Tysabri Diary
    Sue Lawrence's Tysabri Diary
    Tariq's Tysabri Diary
    Tina's Tysabri Diary
    Tony's Tysabri Diary

    Did you find this information useful? Would you like to comment on this page? Let us know what you think! We welcome all comments and feedback on any aspect of our website - please click here to contact us.