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 » Tony's Tysabri Diary

    Tony's Tysabri Diary

    A A A
    [Print this page]

    Share |


    Name: Tony Rooney

    Age: 45.

    Married: 25 years

    Children: 3

    Lives: Melbourne, Victoria, Australia.

    Diagnosed: Sept 11th 2001

    Pre-Tysabri history:

    I vividly remember the day my eyesight went ‘double vision’ & driving home with my right eye shut so I could see where I was going – ‘mad’ you might say & I’ve got to agree with you.

    In hindsight, it was totally mad & stupid; but I was super-human, or at least I thought I was.

    September 11th 2001 – a horrendous day that will stay in my mind forever.

    Watching the air attacks on TV (with blurred vision), we thought at that stage, I may have a brain tumour.

    Whatever the outcome was to be, bring it on!

    The events of ‘9/11’ really woke me up; and I thought I had problems at the time.

    The diagnosis that day confirming MS was both a relief & complete devastation.

    An immediate start of a dose of oral steroids helped me to regain my sight over the next 3 weeks.

    I recall telling my wife (Joanne) that after 18 years of marriage at that point, she’d married a dud & I’d understand it if she wanted out.

    But she didn’t & has stuck with me through the MS path; I’ve known Jo since we were 11 years old.

    Thank God she did stay, because I truly doubt I’d be here now without her support.

    Everything went OK once my eyesight returned until 9 months later, it went yet again.

    In Australia, if you have 2 attacks in 12 months, you’re eligible to start ‘Rebif’ under the Government’s support – wow!

    It’s amazing, being a guy who didn’t like injections having to start injecting myself was a challenge.

    Everything was going OK until a requested blood test suggested by my Neurologist, a Doctor called Helmut Butzkueven, revealed I was building up an antibody to Rebif.

    So, out with Rebif & in with Copaxone along with daily injections!

    As we say in Oz, ‘kick a bloke while he’s down’

    I suffered a couple of minor attacks at this time, trouble with my right leg, which was dealt with doses of IV steroids.

    Life went on until I started a treatment of Mitoxantrone over 2 years ago & progressed to Tysabri; where I’m at today.

    The timing of the Tysabri treatment coincided with it being approved by our PBS (Public Benefit Scheme), which meant the drug will be fully supported by the Government; and you may begrudge paying Tax?

    I’ve just had my 5th treatment of Tysabri & I feel absolutely fine, zero side effects (so far).

    Reading the Diaries of others on Tysabri & the progress of everyone truly astounds me & if anyone has doubts, don’t worry, ‘sign up’ & start ASAP.

    Sure, there’s a concern with the miniscule cases of PML, but I say, ‘if your number‘s up, your number’s up’.

    What are the chances of getting MS & PML?

    My MS has been dormant for the past 3 years with no noticeable attacks, though I’ve lost the ability to write clearly with my right hand – I’m right handed.

    My early exposure & tracking of my Tysabri treatment is only being updated in my Diary now; nearing my 6th Treatment.

    Take care & the best of luck to everyone,

    Tony ( I can be contacted via [email protected])

    Update 20th December 2012

    All has been amazingly great for me the last 12 months.

    I ‘celebrated’ my 5 years of Tysabri a few doses ago.

    In fact last Sat was my 63rd ‘fix’; as I call it!

    Tony.

    9th March 2012

    I’ve been quiet with my updates for a few months now.
    As I near the magic ½ Century of the number of Tysabri Treatments, it’s made me think of has it been worth it or not?
    I’II answered this by assessing where I’m at in life –
    - I’m still working full time;
    - I just celebrated 30 Years in my Job;
    - I haven’t had an MS sick day for 10 years now;
    - I haven’t experienced a debilitating MS episode for about 6 years now;
    - I celebrate my 27th Wedding Anniversary next week;
    - My eldest Daughter celebrates her 21st Birthday in May – 2 months away.

    Am I lucky or what?

    Ok, I can’t run after a missed Bus or even hand write neatly, but my positives far, far outweigh the negatives!

    I have absolutely NO reservations in declaring that Tysabri has been my saving grace in having MS.

    With Tysabri, I received my Blood result Tests for being a possible PML ‘candidate’, & the results were negative – I’m not a PML candidate!

    So, on with Tysabri I go.

    My next Session is 2 days away.

    If anyone can question the risks of taking on Tysabri as an MS treatment; just please read the above!

    Look; I have MS, but it hasn’t got me!

    Update 24th November 2011

    Though it’s been awhile since my Diary update, this time has just reinforced in me, the fact that Tysabri has truly enabled me to live the life that I have.

    I’m truly grateful & blessed in where I’m at.

    Nearing 4 years of being taking Tysabri, the Monthly infusions have become a part of my life & I’ve made some great friendships with people in my Tysabri group.

    Contact with these friends is the only contact that I have with other MSers.

    The Nurses, a mix of male & females, have also become good friends & display amazing support during my infusion sessions.

    Now, in revisiting my MS path, I started with Rebif for 2 years & then after building up an anti body, I was switched to Copaxone.

    With both of these Drugs, I was lucky in that I never experienced the slightest of reactions to these treatments.

    A couple of hiccups along the way, required me to have 2 doses of Predisolone for a gammy leg.

    Even with this, I suffered zero side effects from the Steroids.

    I was then prescribed a 2 year course of Mitoxantrone, where again, I had zero side affects from this Drug.

    I’m so truly blessed in the way Tysabri has been with me & the fact that I still Work fulltime, with absolutely no problems, & to have a life.

    I know that my Story with this horrific sickness, can’t be shared with others.

    This makes me feel humbled & gracious.

    I know just how fortunate I am, & I thank God everyday for helping me.

    One Ty friend, has just started taking the Tablet form of Ty, but it’s only early on &
    I have no up to date information on this.

    For me though, there is no way I could ‘risk’ gambling taking this path.

    I know for a fact, that the IV form of Ty has enabled me to live my life as I know it.

    There is absolutely, definitely, no way in which I could risk switching – but, each to their own!
    I respect an individual’s choice.

    So, it’s now been 6+ years from having any MS setback & 10 years since I’ve had an MS sick day off work.

    I may be unlucky in having MS, but I’m so lucky with what Tysabri has done for me.

    I only wish that others could share in my good fortune.

    I am real, & you are real & I pray that anyone in reading this, may realise that there is hope out there!

    I truly wish everyone all the best.

    Thanks,

    Tony Rooney

    Diary update - December 2010

    Last Saturday 18Dec10 marked my 34th Tysabri infusion.

    I took a seat at the Hospital at 08.30am & I was walking out the door at 10.15am.

    It helps when you have a good ‘Cabin Crew’!

    My last couple of months has seen no change in my condition - which is fine by me!

    As I’ve said, I can still get around OK & I still work fulltime without any impact to my working ability at all.

    I’m still stubborn in not embracing my Walking Stick, or my ‘Charlie Chaplin’ as I call it, as a ‘Jewellery Accessory’, much to my Wife’s annoyance!

    It’s Summer here now in Australia & if anything, the eventual hot weather will take its affect on me.

    When it gets to around 100Deg, being out in the Sun just drains me.

    To actively achieve any physical work outside, I need to do this earlier in the morning before the Sun & the heat comes, or later in the day when the Sun sets.

    The Sun & heat never really used to affect me a few years ago, but it’s different now.

    In all, it gives me an excuse to go for a swim in my pool or just sit back & relax.

    The Pool & the Cooling in my House are great things to have in this type of weather.

    Let’s see if 2011 paves the way for a Tablet version of Tysabri?

    Another Drug, who a friend in the US is taking, called Ampyra, has resulted in amazing results in his walking.

    He attributes Ampyra to this.

    I hear that it’s still in its early stages to hit the shores here.

    Mind you, he had the Stem Cell replacement thing earlier this year, but hasn’t reported any miraculous improvements from it.

    Yet a workmate here, his Sister-In-Law has had it done here in Oz & she’s now out of her Wheelchair – go figure?

    She’s still going through the ‘Quarantine’ Stage.

    Overall, I just pray that I experience a repeat of this year, next year – mind you, a cure wouldn’t go astray!

    Keep well everyone & the best of luck & health to you.

    Regards,

    Tony

    Update 06/09/10

    The last week of July10 proved to be one of experiencing a reality check!
    On the Tuesday after my last Tysabri infusion on the Saturday, I awoke to start the day & I couldn’t roll out of bed to have a shower – seriously!
    I had to get my Wife to help me out of Bed!

    Firstly, I obviously didn’t go to work that day, nor did I for the remainder of the week.

    The reality of it all, was that I’ve had a great run for nearly the last 6 years & this was the 1st ‘setback’ that I’ve experienced for a long time!

    My MS Nurse, Jodi, was contacted & I was told that if my situation worsened, revisit her.

    But, it didn’t – thank God!

    It took a couple of days, but I bounced back to ‘normal’ & went on with life.
    I suppose all good things have to end?

    Saturday 28Aug10 marked my 31st Tysabri infusion.
    In my Infusion group, I really don’t have anyone who’s been on Tysabri for any longer!

    I suppose that puts me in a ‘unique’ group where I’m going into unchartered Territory?

    During the month, I spent some time & read through ALL the Tysabri Diaries & was really moved by the details you’ve all provided.

    Some truly amazing stories given – I sincerely applaud the openness to which everyone has given of themselves. 

    This experience has really made me appreciate life so much more.
    It’s made me realise that life isn’t really that bad!

    Hey – I’m only human after all!

    So, onwards I go – bring it on I say!

    Keep well all,
    Tony

    31st July marked my 30th Tysabri infusion

    What an amazing journey this has been!

    Just when I thought that there was a God & he was on my side, I woke up on the following Tuesday morning & I seriously couldn’t get out of bed.
    I needed the assistance of my Wife to help me get up & about!

    Now, I was feeling OK on the Monday & was very tired when I went to bed Monday night, but the Tuesday outcome was really frightening.

    I placed a call with my MS Nurse straight, but was told to wait & see how I felt in the ensuing days.

    The crazy thing was that I felt OK.

    I managed to take a few days off work & pretty well bounced back to normal nearly straight away.

    A week after, I’m back at work & continuing on as per ‘normal’.

    This episode, being my 1st setback in over 6 years, really woke me up & made me think & realise just how lucky I’ve been.

    This experience was a real wake up call – I’m only human & NOT Superman!

    But, I amazingly bounced back from this & am ready to face whatever comes my way.

    I’ve had an amazingly great run & have taken this experience as a real wake up call.

    It just reaffirms to me that nothing in this World should be taken for granted.
    Amen!

    28th Tysabri Dose

    As usual, the last month has been uneventful MS wise for me – which is just damn great! 3 cheers for Tysabri!

    The most amazing news from my session, was the news that the monthly IV infusion, will be a thing of the past come April 2011.
    What I mean is that Tysabi IV infusion is marked to be replaced by a, wait for it – a daily Tablet.

    Now, I don’t know the name of the Drug, but I was told by my MS Nurse on Saturday, that the Drug is as good as Tysabri.
    I’m sure that any sane person will join me in shouting ‘YIPPEE!’

    Though this amazing, I must say to you, that stopping taking Tysabri scares the hell out of me.

    Whether or not my MS is taking a mild break for awhile or that Tysabri is, & has, been doing something for me for the last 2 1/2 years.

    I like to think that Tysabri has been my saviour in all of this.

    Maybe you know more about this than me – I don’t follow the mews on a daily basis.

    I couldn’t believe the Session though; I sat down at 0830am & was walking out the door at 10:15am!

    This would have to have been my quickest session ever.

    Overall, I remain an extremely lucky unfortunate guy!

    I only truly wish that I could share some of my luck with others.

    I’m grateful beyond words.
    Amen.

    26th Tysabri Infusion

    My 26th Session of Tysabri occurred 1 week later than expected due to my inability to make the Appointment – not bad really, considering it’s the first time in over 2 years that I had to re-schedule my session.

    My time on Tysabri, hasn’t involved any side effects at all.
    I’ve been extremely lucky in taking various MS medications over the last 9 years & have never suffered any side affects.For someone who’s damned unlucky, I count myself extremely fortunate.

    I mean I still work fulltime with my MS being ‘pushed’ to the side in my day to day life. It’s not a case of being ignorant of my situation, but as I’ve said, I’ve got MS BUT, it hasn’t got me!

    I say to you all that Tysabri is the way to go – I’m adamant that Tysabri is keeping me stable & is keeping my life together.

    I’m one grateful guy!

    25th Tysabri Infusion - 13th March 2010
    Well; it excites me to say, my no news is good news!

    It was my 25th Tysbri infusion on Saturday 13Mar10 – I sound like an old ‘pro’ in saying that! I think that I said before, that I have absolutely no doubts that Tysabri is doing something. I can’t believe just how lucky I am – or should I use the word ‘fortunate’?

    A friend of my Wife’s has just been diagnosed with this goddamn thing.

    Sadly, she (ie Julie), has lost the sight in one of her eyes & has been told that it won’t be coming back.

    She’s seeing the same MS crew that I see & they’re worried that another flare up may attack her good eye.

    She’s currently on daily Copaxone shots & I want her to ask if she can try the Tysabri?

    I’m no Dr, but......

    Hey, I’m still at work full time & this MS thing doesn’t get given the time of day.

    I mean, I don’t ignore it, because you can’t hide from it – I know, because I’ve tried it!

    I know that my situation maybe different from many others – I have an Internet mate, who’s in a US Hospital at this very moment, getting his Stem Cells replaced.

    The Tysabri for him hasn’t worked the same for him as it has for me.

    This upsets & saddens me deeply.

    I just hope that many of you are on the same road as me.

    My highway has enough lanes for everyone – come across!

    The best of luck to you all - Tony

    2 Year Update

    Well, I’m first to admit that I’ve been quiet for awhile now – but, I’m still here.

    I’ve had nothing happening to me in the last few months that I really thought would be of interest to anyone.

    But as I say, ‘no news is good news’.

    I must however retract what I just said!

    Last Saturday, 13Feb10, marked my 2 year milestone of being on Tysabri.

    I’ve been waiting for this milestone to be reached as I want to say to the World, or whoever is listening, that Tysabri is a real thing & has without doubt been a big help as to where I’m now at.

    Look, I can’t write with my right hand & can’t run marathons anymore, but I’m still working fulltime & have been ‘attack’ free now for a good 5 years.

    The 5 years is made up of the last 2 being on Tysabri, the previous 2 being a 2 year course of Mitoxantrone & the 5th year I was on Copaxone.

    But as you know with MS everyone is completely different.

    I’ve been blessed with where I’m at with this thing.

    My ‘can do’ list far outweighs my ‘can’t do’ list.

    Things for me could be so, so much worse than what they are.

    Actually, life is pretty good!

    I’ve absolutely no doubt that the Tysabri treatment has been the main player in this & is my saviour.

    I have a friend who was recently diagnosed with MS, having lost the sight in one of her eyes. The sight hasn’t come back & she was told only last week that it won’t come back. I may be a 46 year old  bloke, but this made me cry for her.

    Why does this type of thing happen to someone like her?

    I just don’t know.

    She has started Rebif last week & sees the same Drs I see & they wanted her to start ASAP in having the sight in only the one eye.

    You’ve got to ask, is there a God?

    November 2009 Update

    Hello to all!

    I’ve been quiet with my Diary over the last few months as I’ve felt that I’ve had no news to tell. However, I realised after seeing my Neuro, Helmut Butzkueven, last week for a routine check-up, that no news, is actually good news!

    What I mean is, we compared my recent MRI scan results to a set of results from ’06 & there were no new lesions appearing – this is what I mean by the ‘good news’!

    Since ’06, I’ve had the 2 yr course of Mitoxantrone & then onto Tysabri where I’m at now – actually, I had my last dose last Saturday 21st Nov ‘09.

    Though my running Marathon days are gone, let alone running after a missed Bus, I’m still working full-time & am still managing to ‘pull off’ the charade that I live under at work!

    As I’ve said, my MS isn’t a forbidden secret, but there is never any discussions about it - & I don’t bring it up or whinge about it; I just suffer in silence.

    There’s no doubt that the Tysabri is doing something!

    Whilst typing this, a mate dropped by whose son-in-law has just become a 1st time Dad & is due to have his stomach removed next week because of Cancer.

    As a Dad of 3 myself, this situation has really moved me & plain upsets me.

    It makes me realise that MS is nothing compared to this Cancer story.

    This is a real situation everyone – I’m not making it up!

    Overall, Tysabri, to me at last, is doing something.

    Some people have major gains in taking Tysabri & I say ‘good on them’, but as you all know, with this MS thing, everyone is different.
    Tysabri IS keeping me where I’m at in life, & for that, I’m eternally grateful.

    All in all, I’m lucky!

    16th Tysabri infusion
    The 4th July ’09 marked not only America’s ‘Independence Day’, but also my 16th Tysabri infusion.

    This infusion time of about 3 hours gave me time to reflect on where I’m at.

    Tysabri has been a godsend, as I’ve had no attacks now for nearly 5 years; which is great.

    I was previously on a 2 year course of Mitoxantrone & prior to that, I was ‘jabbing’ myself with a daily dose of Copaxone. I thank God that I’m past that & now onto my monthly dose of Tysabri.

    Tysabri has been a ‘dream’, where I’ve had zero side affects & it seems to have ‘halted’ (?) my MS.

    MS is torturous enough as it is, & to me, it seems that maybe Tysabri is doing what it should & is ‘halting’ any further MS debilitation.

    I really don’t know – I can only say what I’m feeling.

    Speaking to others in my Tysabri Group, their Tysabri experiences differ to mine & it only further highlights just how different MS can be for each individual!

    For someone who’s been unlucky with where I’m at in life, I consider myself the opposite – actually, I’m not ‘unlucky’, but just ‘unfortunate’.

    Update June 2009
    Well, this my 1st Diary update that I’ve made in a couple of months & is probably an indication of there being no news of my situation.

    This is probably good news in that it’s a clear indication that Tysabri is doing its job.

    I’ve had zero side effects from the treatment of this drug after my 15 infusion treatments so far. For this, I’m extremely grateful. I’m still carrying on with my life the best way that I can & thank God that I’m still working full time.

    Thinking about my last few years of having MS, I wouldn’t have had an attack for what must be 5 years! Wow, the time flies.

    My eldest child, Beth, turned 18 last month & I’ve nearly notched up 25 years of being married – I think that means I’m nearly eligible for parole?

    The gradual decline in my physical being is one thing, but at this stage, my MS seems to be under control. The condition has taken a ‘back seat’ in my life & I don’t talk about it unless I’m asked & even then I keep the answer ‘short & sweet’.

    Nobody wants to hear of my woes & I don’t want to burden anyone with them.

    Believe it or not, I ‘forgot’ about my 2nd last Tysabri IV session & ended up doing it the next week. We have sessions 2 Saturdays a month, in the morning & afternoon.

    There’s around 10 in each session, so that equates to around 40 of us on Tysabri.

    That’s only at this Hospital though; NOT across Melbourne. I’II ask at the next infusion session how many of ‘us’ there are here in Melbourne who are on Tysabri.

    I’II say it again, I’m totally wrapped in taking Tysabri & its affect on me – anything’s better than those goddamn daily injections.

    The sessions are held in a Chemotherapy Ward at BoxHill  Hospital here in Melbourne, Australia which is about a 20 minute drive from home on a Saturday morning. I’m in at about 08:30am & are walking out the Hospital at about 11:30am – over & done with quite quickly.

    In my session, there’s a chap called Bobby, he’s about 40, & was in a wheelchair for 14 years because of MS & now, I was watching him walk across the car park last week, you really wouldn’t notice a problem. Now, this guy is beyond amazing & I’m blown away with his MS history. There were 2 girls (Ladies), in my ‘make up’ Tysabri session last month, where one of them was of Islamic origins & the other was a young Aussie girl aged 23 (which I overheard in conversation). My point here is, the total randomness of whom this disease affects!

    Overall, another month of reporting that no news is good news.
    Best wishes to everyone & if I can handle this sh*t, anyone can!

    Cheers,
    Tony Rooney ( [email protected])

    13th Tysabri infusion

    Today marked my 13th Tysabri infusion.

    I’d really like to be able to rave about something good about all of this, but I’d be lying. Look; everything is stable, so I shouldn’t complain about anything.

    The patient numbers are down a few, with the Easter holidays & they’ve organised alternative times for their infusions. The IV insertion went OK & the drip started at about 0930am & took the standard 2 hours. With the activity in the room, I find it difficult to carry a conversation unless the person is seated beside me, so I keep fairly quiet & sit back & have a rest. Jodi, the MS Nurse, serves up a coffee & a biscuit & we all have a chat.

    It’s good therapy in a way, in that the topics of discussion can be totally non MS related & are a relief after sharing discussions about various MS troubles.

    Everything is quite stable for me at the moment, which is good. I have an appointment to see my Neuro in a couple of weeks & I’m going to ask about my last MRI as I haven’t discussed this issue for years with him & am interested in how the MRI looks & the number of lesions. Though I haven’t had an attack for about 4 years, the gradual decline in my balance & my ability to walk long distances is extremely frustrating & demeaning.

    Again, I’m still working full time & my MS isn’t a point of open discussion at work. It’s kind of something that happened in the past & has been forgotten about; which is the way I like it. It’s not a case of ‘ignorance is bliss’, but it ‘bores’ me & it just isn’t an enjoyable topic of conversation for me. I mean, if I’m asked about MS, sure I’II answer any questions about it. I’II also ask my Neuro about what treatments are in the pipeline & do we have anything to ‘look forward to’.

    Update March 2009
    My last 2 Tysabri infusions have been totally uneventful with not much to report.

    I’ve now completed my 12th infusion with absolutely zero side effects over the last year; which is great.

    Apart from catching up with the ‘crew’ whilst we were getting our infusions, there was no real news.

    The infusion environment can become quite hectic when everyone is present, so discussions with everyone is quite impossible. The insertion of my IV line was painless & I really didn’t feel a thing; it’s a credit to the Nurse.

    Really, I suppose the Tysabri is doing what it should in that I’ve been relapse free now for coming up to 4 years. The slow deterioration of my balance & other things becomes hard to deal with, but you just have to ‘grin & bare it’; it could be worse!

    As I’ve said earlier, the Tysabri treatment hasn’t really helped me to regain the ability to write clearly with my right hand, but I’m using it to type. I’m on a Treatment Study with taking Botox to see it’s affects on having a tremor with my right hand & MS.

    I don’t really think it’s doing anything – there’s no way I even try to carry a coffee in my right hand! BUT – I have the arm of a 15 year old thanks to the Botox!

    Look; I say Tysabri is the way to go & it beats daily injections hands down.

    25Oct08
    Today marked my 6th Tysabri infusion.

    The day started off with me starting to drink a couple of litres of water because I was previously informed that drinking water makes you more hydrated & your veins are easier to locate. I say this because last time the Nurse commented on trying to locate a vein in which to insert the IV line.
    Anyway, it was forecast to hit 30 degrees celsius today.

    It was 7:20 am when I left home for the Hospital & there was already warmth from the sun felt through the windscreen in the car as I drove.

    I arrived at the Hospital about 20 minutes later & sat & read the newspaper taking in the current global financial situation & realising that my retirement is being pushed out yet further again. It’s weird you know, I’ve become more interested in this area because of where I may be going with my MS & how long I’II be able to work & the fact I’m closer to retiring than when I first started working; I’m 45 years old.

    I found a parking place in the ‘disabled’ parking area & made my way to the Oncology ward to start my ‘fix’. I have a permit that I display which allows me to park in the ‘disabled’ area, so it’s all legal & legitimate. 

    I basically collapsed earlier this year outside my car after being in the supermarket & the effort in all the walking around had taken its toll. This experience prompted me to obtain the Permit which I now always use; it’s great getting a good parking space.

    All I need now is Valet Parking & I’II be totally satisfied!

    I took the elevator to the Oncology Ward & as I entered the Ward, I could hear Jodii (the MS Nurse) organising Michelle & Jan (assistant Nurses) preparing for the days activities. After saying hi, I made my way to my seat to await. It’s funny, I was there for my 6th infusion & I’d always sat at the same spot!

    I was the only patient present at this early stage & made myself comfortable in preparation for the infusion. Jan approached me to take my BP & temperature.

    Michelle then set me up a few minutes later & we started the infusion at 0915am.

    A vein was found, no problems, & the IV was inserted. The last infusion I had, I hardly felt the IV line going in, but this time I ‘jumped’. OK, I know I’m a bloke & I don’t watch the IV line being inserted, but I still felt it.

    The others in my session started to turn up & took their places; 4 blokes & 4 women at the maximum peak time. Now, I have 2 particularly interesting people in my session; a guy called Bobby & a lady called Lena.
    Bobby is an amazing person whom I find truly inspirational.

    He was diagnosed with MS at 13 & ended up in a wheelchair at some point; he’s now about 40.

    Now however, he’s up & walking now & you wouldn’t notice he has MS.

    He’s made a DVD on MS which has been shown on commercial TV in OZ, where he interviews all players in MS, from sufferers through to the Management Board of our MS Support Centre which consists of Sydney & here in Melbourne.

    The other person, Lena, is amazing in that she is a major Fundraiser for the MS Society as well as a major figure in fundraising for the Royal Children’s Hospital here in Melbourne. This Hospital is a world leader in treating kid’s illnesses. I was only there last week as my 2 year old nephew had major heart surgery.

    There’s a lot of activity in the room when we’re all ‘hooked’ up & I kept to myself as I don’t see this as a time or place to have a whinge about life.

    It got to about 11:00 & the treatment was finished.

    The IV was removed, which always feels good, a band-aid placed over the IV area & after wishing everyone all the best, I made my way back to my car.

    About 30 minutes later I was home & started doing some gardening as everyone was out & I had the house to myself. As usual, it’s a few days after the infusion & I feel fine. I’m not exactly ‘leaping tall buildings in a single bound’ as yet, but it has only been 6 Tysabri infusions.
    We’II see what happens.

    One thing I do notice, is that I’m using my right hand more to type on the keyboard.

    Remember; I can’t write with my right hand anymore, so any output from my right hand is great. My 7th infusion is scheduled for later this month.

    So in closing, maybe no real news is good news?

    Keep well everyone & I wish you all the best,

    Tony Rooney

    Saturday 29th November 2008

    My Tysabri ‘fix’ was uneventful.

    The only thing of importance is that I realised that this wasn’t my 8th visit, but it was my 9th! Wow; the time flies!

    Nothing really to say, except that I met 2 ladies; one of them was having her 1st  Tysabri infusion & the 2nd lady told me she has discarded her ‘stick’ & was back driving & taking her kids to School again! I found this to be a moving story & I was so happy to hear that she’d experienced such a life changing Tysabri experience.

    I caught up with the 1st lady after the infusion, in the Hospital foyer.

    We exchanged stories & she was amazed at where I was in the MS path; working fulltime & still getting about. It made me realise how ‘lucky’ I really am though.

    I find sometimes, it takes someone else’s view of things to make me ‘smell the roses’!

    Whilst in the foyer, I was confronted by a stranger who noticed me holding my ‘Tysabri Diary’ & queried me about Tysabri as she has MS & was questioning the effects, if any, it’d had on me. I suppose after 9 sessions, I was able to comment on it 1st hand. I’m still where I was at the beginning of the Tysabri treatment; I’ve had no relapses, so no news is good news. Last week I started participation in a study involving Botox in MS. This is all related to my ‘fine’ motor control with my right hand where I can no longer write, let alone think about carrying a cup of coffee with my right hand. Concentration in using my right hand, causes it to start ‘shaking’ & anything in my hand will end up being spilt or dropped.

    If anything, at least I now have the elbow of a 20 year old which proves that Botox does work! Why people suffer from Botox injections astounds me. I had about 10 injections into arm muscles & boy, did it hurt or what! I’ve been having Botox in my arm, but not to this degree, for about 12 months now. I think that it makes some difference in like using the PC keyboard, but I still can’t safely carry a coffee in my right hand, let alone write. I’ve even got to get the kids to put Vegemite on my toast!

    The challenge here, is to not put too much on my toast though!

    I’ve fairly well resigned myself to the fact that my ‘clear’ hand writing days are a thing of the past; so I’ve put a stop to signing autographs.

    2 weeks this coming Saturday will mark my 10th infusion; stay posted!

    Tony Rooney

    Saturday 20th Dec ‘08

    My 9th Tysabri infusion was quite unremarkable.

    At the busiest time, there were 10 of us getting our infusions.

    There were 3 Nurses about being kept quite busy.

    A lady I mentioned in my previous entry who was having her 1st infusion, was quite crook afterwards, which required her to have a course of steroids; Prednisolone.

    I think that this was a case of ‘bad timing’ & her MS attack just coincided with the start of the Tysabri treatment though.

    However, another guy, I overheard, experienced a problem with some type of ‘numbness’ with his leg.

    I think he’s been on the program for at least the same time as me; 9 months, if not longer.  I queried the affect a new drug called Campath has on MS, but was told that Tysabri was ‘the’ MS drug treatment at the moment.

    My next infusion being my 10th infusion is scheduled for the 17th Jan ’09, & I’II be holidaying in Sydney at this time, so I need to schedule an alternative date.

    No doubts this will be on a weekday in the same ward, but with others being treated with chemo drugs; ie Cancer sufferers.

    In the past I’ve seen this as a reminder that things could be a lot worse than they are with my MS. If anything I’ve noticed with my Tysabri treatment, I’m now using my right hand a lot more for typing, but handwriting with it is still a no go if you want legibilty! 

    Tony

    My 10th infusion!

    ‘Pop the champagne corks’; this Tysabri session marked my 10th infusion!

    Where has the time gone?

    I’ve got to say as far as any ‘improvement’ is concerned, I’ve noted that I’m using the fingers on my right hand a lot more when typing on the keyboard; as I am now!

    I still can’t write clearly with my right hand though, but let’s wait & see?

    I missed out on my scheduled infusion because I was on holiday in Sydney.

    This session was an ‘abnormal’ one to allow me to ‘catch up’ with the program; my next scheduled session is on Saturday the 14th Feb ’09.

    This session however, was one with 2 ladies that I hadn’t met before.

    The IV insert was totally painless, performed by an MS Nurse who also administered an IV on me a couple of months ago & again, was totally painless!

    The next IV the Nurse inserted on the lady next to me, she ‘missed’ & had to try a 2nd time though.

    The 2 ladies, later, ‘hit it off’ & started discussing their lives etc, etc.

    I was totally out of the discussion & didn’t even try to participate, so I sat back for the next 3 ½ hours & listened to music on my iPod.

    Overall, a very non eventful session.

    Noting the small change I’ve experienced with my typing with my right hand, let’s see what the future holds?

    Tony

    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
    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


    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.