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

    Jan's Tysabri Diary

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    Hi all,

    My name is Jan. I live in Bath with my young daughter.

    I was born in 1968 and diagnosed with RRMS in June 2003.

    My mother (deceased) had MS and one of my brothers also has MS.

    First sign that led to my diagnosis was a weak left hand.  This was followed by problems with left foot dragging & tripping.

    Started Betaferon in 2004, had no significant adverse reactions.

    Other meds - Baclofen & Oxybutynin.

    Continued with a few minor relapses which led to general mobility issues and walking (not far) with a stick.

    Had a significant relapse in 2008 - optic neuritis. This recovered so I can still drive, thankfully!

    But this summer I have had 2 major relapses which brought more mobility issues and left me using 2 sticks or rollator and off work for quite a long time. This hit me emotionally and it took me longer to get my usual coping head back on.

    My neurologist said it seems Betaferon isn’t doing the job, and my MS is now very active. He suggested could go onto Tysabri.

    I’ve read various stuff online and have decided to go for it (the PML issue is scary but have decided to go ahead).

    Had an appointment through today for MRI scan in a couple of weeks so hopefully will proceed before too long.

    Hoping keeping this diary will help me be aware of how things are going as time goes by.
     
    Jan

    December 2011

    A big gap since my last post.

    Has not been a good few months, with relapses in summer further affecting my mobility, and leaving more cognitive issues and increasing fatigue.

    I reduced my working hours significantly earlier this year, but have now totally finished work as it all became impossible.

    Now I am focussing on trying to keep things positive, with physio etc., and am trying to keep positive.

    During difficult times this year I have found the Ladies With Lesions (LWL) Facebook group a very good, supportive place to be.
     
    I am continuing with Tysabri as I still hope it will improve things.

    March 2011

    Apologies I have not updated sooner.

    To be honest, there has been nothing to tell. I have had 3 infusions so far. With no side effects but also no positive effects either!

    I am glad is going ok, no relapses - but still hoping to see the boost that some others have.

    Jan

    Diary update - December 2010

    I got my MRI scan and finally saw neurologist. He says T is right for me and need this more aggressive treatment.

    Have stopped Betaferon to let it clear out of my system.

    First infusion will be scheduled for late January.

    Can’t wait - hopefully I will be one of those that gets positive QoL effects.

    Fatigue hitting hard and struggling to keep status quo.

    Jan

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