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

    Claire's Tysabri Diary

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    Claire

    Life pre-Tysabri is currently rather crappy!  For as long as I can remember I've had bouts of illness that were always put down to a "virus" told to take paracetamol every 4 hours and take bed rest... I was then diagnosed with glandular fever at 13 which meant from that point onwards it was very easy for my GP to say it was just still in my system.

    About 11 years ago when I was 21 I remember losing a huge amount of weight very quickly.  I'd been dieting for a while but this was different it just dropped off me and one side of my body went completely numb.  I was exhausted and in addition I found it rather funny that when I put my head down I had an electric shock type feeling in my back.  I used to do it over and over because it felt weirdly quite nice!!!  I thought I'd trapped a nerve and of course my GP agreed and that was it.. no investigations... nothing... I was told to rest and that was it... a few months later and I felt a lot more like my old self again and all was forgotten.

    I then started to get the most awful tinnitus in my right ear.  I was eventually referred to a specialist who kept finding a strange dip at one frequency in my hearing and who after about a year finally sent me for an MRI scan.  He looked no further than the inner ear... found nothing and I was told to put up with it.  I just stopped moaning about it... Thats what you do when people stop listening to your symptoms besides I probably caused it myself listening to lots of loud music and going to lots of gigs.

    10 years on I still have chronic tinnitus and find listening to people talking very difficult in certain situations.

    Throughout the past 11 years I've had various times where I had unexplained 'viruses' and bouts of depression.  I lost my mother some 7 years ago so its been pinned on that for such a long time but before she passed away I was on anti depressants.  I suffer so badly from vertigo I can't stand shopping in crowded places or trying on clothes in a changing room... all I want to do is pass out... and I hate it when people ask if its just the 'tiredness' thats bothering me... I'm not tired! I can sleep for a month and still be so fatigued that I can't lift myself out of bed.  It's so difficult to explain to people so like I said before you just stop bothering to explain.  You go over and above whats expected of you... I have become proper OCD about cleaning at home and at work I became a proper control freak.. I blamed myself for so long because I couldn't remember the title of a movie I was working on or I couldn't remember my clients name so I started to create elaborate spreadsheets that made me look uber efficient rather than simply struggling to get by without everything written down.  Only problem with creating work arounds is that people are even less understanding because not only do you look absolutely fine but you are better at your job than the well person next to you. 

    I finally got diagnosed when I finally convinced myself that it was all just a big hangover...

    I moved to London 4 years ago and was having so much fun getting drunk, that by day I just thought I felt rubbish because I was hungover... yes it was a struggle to get out of bed (I was up late) ... yes I was wobbly on my feet (| drank a lot last night)... yes my tinnitus was really bad (I was in a loud bar)... yes my eyesight is really blurry (it was smokey) etc... etc.. etc...

    After months of recurring eye problems though my GP in London told me to go to the specialist eye hospital as she was worried (finally a good GP!!!!) There I spent months going back and forth as they could see something but weren't sure what!!! I was diagnosed as having Uveitis (which sounded like a made up illness!) and given steroid drops... luckily there was a fantastic woman at one of the uveitis clinics who examined me a few months later... she said my optic discs were pale on both sides and made me do the colour blindness cards and I failed miserably.  She gave me a letter there and then to give to my doctor to refer me to a neurologist.  She suspected MS.

    At first my consultant predicted Neurosarcoidosis... he didn't want to believe it was MS.  But then another relapse... and another... and then I was told that having a baby helped with neurological conditions... (it didn't for me but the baby is beautiful)

    So many months later and so many scans and lumbar punctures and evoked potentials I was finally diagnosed with the worst possible outcome... I don't have a virus that just wont go away.  I'm not a lazy bones... and worst of all it isn't a hangover.  I have highly active relapsing remitting MS.  Every scan has shown new lesions and all the old ones are still there and still active, hence why I am continuing to feel mucky! 

    Finally now I have no option than to start on the scary treatment that is Tysabri.  I am petrified of the risk of PML - who wouldn't be? I mean MS won't kill me but PML might.  BUT I LONG for a day when I want to leap out of bed to run in to see my baby girl... I long for the day I don't have to take a month out just because I pushed myself for a day... I long for a day where I don't get numb patches in my face, for the day when my eyesight starts to come back the day when I don't feel totally confused and dazed when I leave the house.... the day when I don't need to hold onto my babies pram for dear life for fear that I might topple.  The pain might go away, my zest for life might just come back... I might even be able to start singing and songwriting again!

    So next week might be the first week of the rest of my life!  Why am I so scared?  We will see...  I'm hoping that after infusion number one I will be able to say I'm feeling fab! :)  and by infusion number 4 that I feel cured and by infusion 5... that I feel I can walk down the isle in the pair of stilettos that I have chosen to wear with my wedding dress :)

    Diary Update January 2013

    Had infusion 14 – Jan 8th what a difference a year makes.

    Since starting my Tysabri infusions in 2011 I have managed to make a life for myself again.  I was struggling so much not only with painful legs but with terrible fatigue that I just could not shake.  Christmas 2011 I couldn’t even help put up the decorations and it was awful feeling so useless.
    After my 6th infusion I had an MRI which showed that although all my lesions were still there, no new lesions had appeared and the old ones weren’t showing signs of being active.

    This coupled with the fact that I had tons more energy and no pain just made my day.

    So steadily since starting tysabri I have felt better and better… managed to get married and go on honeymoon.  I’ve been running around after a toddler and two puppies.  I have started a full time job and completed an evening course in a local college.  I’ve been like a different person.

    In December I had my first relapse in ages and it really upset me as I wasn’t expecting it and I had been hoping that I’d never have another.  I’m waiting for my MRI to see if I have any new lesions but actually I have been really shocked at how bad it was but then equally how quickly I have recovered.  I didn’t have steroids this time (they really don’t agree with me) but already my walking, my concentration and energy levels are back up.  This is within about 4 weeks (unheard of, for me anyway)  I only just began taking Pregabalin though and I’m not sure if this taking away the God awful agony has helped speed things up a bit.

    Generally I seem to tolerate the Tysabri really well.  I have the infusion on a Tuesday morning and then need to go home and sleep.  I tend to be rather tired and have headaches on and off until the Friday but then I feel pretty awesome.  I’ve started calling it my jungle juice.

    By the end of each month I know I’m ready for the next infusion as my energy does decrease noticeably.

    I should send an update when I have the results from my MRI, I do feel like there might be something new as I had symptoms affecting the left side of my body this time rather than my right… but we will see.

    Until next time… x

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