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

    Jayne's Tysabri Diary

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    Diagnosis:  June 1994

    Date of beginning Tysabri:  July 2009

    Further medication:  Clonazepam (trying to calm eyes down!), Zanaflex (muscle spasms in legs!) and Detrusitol (does amazing things for the bladder!).  Running joke is if I'm turned upside down and shaken, I'll rattle.  This is just general tablets, and doesn't take into account the dreaded course of steroids when needed!

    Main problems at the moment: Eyes, including oscillopsia for over 12 months(meaning had to surrender licence!), balance (probably linked to the eyes!), gait and general walking, severe tremor in left hand, uncontrollable leg spasms.

    I'm 40 and and was diagnosed when I was 22.  I now live  in Huntingdon, but was living in Jersey at the time of diagnosis.

    Whether it is related or not, I had a car accident (little shunt into the car ahead!!) which left me with what I initially thought was whiplash, but this deteriorated into pins and needles in my hands, double vision, slurred speech and loss of control of my left hand (which is interesting when you're left handed!).  I was very lucky though that at the time I was doing work in an hotel for a locum GP.  She very quickly recognised things were not right, referred me to a neurologist, who, after an examination, tests and a  lumbar puncture diagnosed MS.  Speaking to other people, I now realise this was extremely fast, but for my entire working life I worked in Hotels, and I think they were all scared of losing contact with me.  After a course of steroids, symptoms calmed down,  although I was  left with permanent pins and needles in my hands.  For 12 years I was generally left to get on with it.  Go to the doctors for steroids when recognisable symptoms flared up, neurologist annually and make sure everyone knew where I was.  I do not mean to make this sound glib or that things were easy, because, believe me, they weren't, and the first three years were virtually unbearable.  But I have a supportive family, and we got through!

    However, seven or eight years ago, the episodes were becoming more frequent (I could still work and walk, but going to the doctors for steroids more often!).  I didn't realise this was frowned upon, until 2006, when my Neurologist advised me that we needed to consider something else to try to calm things down.  So moved to Copaxone.  I thought this was working and was merrily  injecting myself every day for three years.  And this was fine, still working, and enjoying myself.  In 2009 though, when back to the Neurologist, he said six episodes a year, followed with  steroids  meant that my MS was now more aggressive, and we considered moving to Tysabri.  This was not a quick decision, as all side effects needed to be looked at, and took a month for me to be happy with the decision.  So I started  the treatment in July 2009.  I stopped working at the same time as I had tried to cope and keep working, but things were getting harder.  However, I've gone from 6 episodes a year to 3 in 2.5 years so the MS  is definitely more under control.  The left over symptoms after episodes are more noticeable (bouncing eyeballs is the best way to describe the worst!), loss of  use of my entire left side and my walking is more difficult, but I'm still walking and things could be worse!  I have great family support and my partner is the best!

    Treatment coming up is no. 35 (wow!), have had two MRI scans, and three JCV tests with no complications, so it's doing something right for me.  I miss work as 16 years working and building a career in Hotels was something I enjoyed and wanted to do,  but MS is not all I am, and it wont define me, so will keep going, doing what I do, for as long as I can

    Hope you enjoy my diaries.  They will probably  be from a slightly different viewpoint, as I'm two (almost three) years in, but I hope they give you more information and things to consider. 

    Jayne x

    10th April 2012

    Ok, had to stop and think about this one, which is part of the reason I'm a little late!

    Right, infusion was fine, very quick, as the nurses always are, and time with the neurologist was good. I had spent a couple of days before making notes about everything I wanted to discuss so I knew I wouldn't forget anything!

    Oh, hindsight is a wonderful thing!

    The list I quite methodically made for him came in quite handy the following week when I had to do a quick re-assess!  Literally 7 days after the infusion, I tried to get up in the middle of the night to go to the loo, stood up and fell over, unable to get up!  That was that then for a couple of hours! (although, honestly, probably closer to a week!)  Not fun!

     I'm fine now, got to the doctors, ruled out all other options, and then went straight onto steroids ( 60mg for 5 days, tail off period etc!).  Will be finished in about 10 days, but they kicked in within about 5 days, and I'm feeling SO much better now.

    The reason I had to think about including this is that I don't want to put people off Tysabri, that it doesn't work.  Please understand this is my first episode in 13 months, and I can live with ONE episode a year as if you looked at my previous notes, I was averaging 6 a year!

    I have more thoughts and points that I think of daily (although the last two weeks have gone out the window!) so if you want any info my blog is:

    Please believe, life is good, now operating on all cylinders again (with a slight blip in the middle!)

    Next infusion in about two weeks, which will be interesting, as I have a feeling there might be a few people who want to talk to me in more detail  Hey ho!

    See you next month anyway!

    Jayne :-)

    p.s got my chair!  It's excellent.......and so light!  So a lot easier to use for someone with very little control in their left arm!

    Infusion 35 (!)

    I want to say 'same as normal', but that makes me seem really casual about it.  Believe me, I'm not!  It is getting quicker though, as I got to the hospital, talk to the nurses (they ask me the normal health  confirmation questions), the cannula was fitted, and I was done and dusted in an hour and a quarter!

    Although, did get told off, as the previous day, went out on a little mobility scooter to see whether I could get round faster, and assumed I could still do everything I used to be able to do so managed to drop it on my foot!  Spent the hour explaining that, no, it wasn't the MS in any way, it was just me being a prat and for those that know me will understand, I am PARTICULARLY clumsy!

    However, no matter how many times I have this, I will NEVER like it when they put in the cannula.    There can't be anyone out there who enjoys having a needle shoved in any part of their body.  But you do get used to it.  However, I can always guarantee, the night  of the infusion I will sleep extremely well.  Whether it's the effort of the day , but I go out like a light!

    BTW though, was talking to the MS nurse, and we started talking about something that I had forgotten about, so thought I would share as it may help someone else.  When I first started with the infusions, the week before it was due again, I would feel like death! Extreme fatigue, severe tiredness and crabby to the nth degree.  Immediately after, those feeling were gone and I'd be back to normal.  This went on for about 8 or 9 months, but it does pass.  No idea why, and the neurologist had no explanation as they said it should be working on a level.  This may be only me, but if anyone feels the same, it passes!

    Oh well, that's all at the mo', but see you next month.  Appointment with the neurologist next month, so possibly more to add, but we'll see!

    Jayne x

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