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 » David's Tysabri Diary

    David's Tysabri Diary

    A A A
    [Print this page]

    Share |

    I am a 40 year old man, with two daughters and  live on my own. I was diagnosed with relapsing/remitting MS in February 2004, although I had visible symptoms in June 1999 - enough to warrant a visit to a neurologist. My main symptom at the time of diagnosis was a heavy right leg after walking to work - Diagnosis was confirmed with a MRI.
    I had my first relapse in Dec 04 - a case of tilted vision . Then another in Feb 05 affecting my right leg - very heavy and drop foot. I went onto Rebif Apr 05. Nasty relapse in Feb 06 - affecting balance, vision and drop foot - admitted to hospital and course of IV steroids. Car was adapted - for every hurdle put up , I learn to jump a little higher.
    Next relapse was May 07 - affecting right leg again - worse foot drop - Oral steroids - only partial recovery with leg/foot. Next  relapse in September  07 - affecting drop foot and right arm and hand. Oral steroids again. Little recovery with hand/arm and foot - very much affecting my ability to walk very far (use elbow crutch) right hand is weak , balance is very poor- have trouble dressing, cutting food etc. Became mildly depressed with the relapses  - every time I  got up, MS had a habit of kicking me back down again. GP put me on Citropalm - 20mg a day.
    I asked my local Neurologist to refer me to a London neuro as I had read about Tysabri. My MS had become quite active , the interferon was not working. Saw London neuro in Dec 07. He told me that I met the qualifying criteria and told me to stop taking REBIF. Had another MRI scan in Jan 08 - which showed new lesions. Started Tysabri on 20 June 08. 
    So that's it - while my relapses have not been too bad, they always target the same area.
    Kind regards


    Apologies for the lack of updates - I'm taking a break from Tysabri at the moment.

    Stopped in October this year. I tested positive to the JC virus and I also felt Tysabri not stopping/slowing down progression - so I stopped infusions. So in my case I felt the horse had already bolted.

    Saying this I met lots of people at hospital that had positive effects of being on Tysabri  - if I had seen any of these benefits I would still be on Tysabri - pml or no pml !!

    3rd Infusion 15th August 2008
    Hello All
    I apologise for the delay in updating - but with children off on holidays and new hospital visits I kind of forgot. I have now had 3 infusions, the last being 15th August and I so wish I can report back encouraging results - but so far nothing noticeable - maybe I am too impatient as  I've heard such positive results. The positive thing to draw from this is at least my symptoms are no worse and that can only be a good thing.
    All the infusions have gone fine - even though with all the travelling to the hospital, it is a whole day thing.
    Next infusion is 11th September - so my fingers are crossed.
    Take care everyone


    Update 26/01/09

    Dear all - I apologise for not updating sooner -I'll try and be more regular ( the diary that is).

    The infusions are going fine - except they seem to happen in a different ward each time.

    This is my 7th infusion - I have had no relapses for 13th months or so but I have seen no improvement to current symptoms (severe drop foot and weak arm) So it's status quo.

    The reason Tysabri is administered is to reduce relapses. Which it has. The icing on the cake is improvement to current symptoms. Which it hasn't. So yes it's doing what it says on the tin.

    My consultant told me not to expect miracles, but fuelled by miracles on You Tube, this is only human nature. I  truly expected to leap out of bed shouting ' I'm cured'. Imagine the heartache I felt everyday when this was not the case. So I've realigned my expectations ie to be more realistic. Yes Tysabri is working, but I have never given up hope , something that I will always do. And I have met some wonderful people. People who make the infusion fly by. All of the nurses, doctors and fellow MSers and their other halves who make me smile and laugh. I thank you all.

    Carpe Diem my friends.

    Next infusion Friday 30th January 2009.

    Latest update - 06/02/09

    Latest infusion ran like clockwork - although I was moved to a different ward. Was in and out within 3 hours - pretty good in London.
    Another month without relapse - so hooray - no improvement to current - so boo (again). A fellow MSer had seen our consultant a few days prior who said  ' Good news about no relapses, and don't give up on Tysabri improving current symptoms - your body has been under attack for many years - give your body time and it may find a way to recover!!, nothing is certain in this world'
    So it hasn't given me false hope - but it has told me never to give up believing. Hard on  certain days when I feel rubbish, but true all the same.
    Next infusion towards the end of February - I will update diary soon after. In the meantime if I learn to walk on water, you will hear me singing from the rooftops.
    Have a fab month and take care.

    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
    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
    Simon'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.