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

    Richard's Tysabri Diary

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    My name is Richard and I have Relapsing Remitting MS.  Whenever I say that I really feel that I should be standing in a circle (AA style).  I'm relatively new to the notion of having MS and I suppose this diary is as much to enable me to come to terms with it, as it is to share  my experiences with others.
     
    I'm 37years old, I live with my partner Karen and our son, and I'm a nurse. Over the the last 7 months Karen has been an absolute rock.  She has dealt with the situation we have found ourselves in in a manner beyond which I could have hoped for.  My son has accepted the situation, the changes in his dad, and the current limits of my body.  Without their support, tolerance, and love I would not be able to contemplate creating this record of my experiences.
     
    My journey probably begins years ago but most noticeably over the last 2 years.  I had become increasingly tired.  I've never been super fit, but I ran at quite a respectable pace in my twenty's, at 33 when no convenient bus route passed my work I cycled 25 miles a day for several months without a second thought. Then about 11 months ago I woke one morning and the left side of my face was numb.  This will sound silly but I thought at least it's not sore.  I thought it was dental and promised myself if it started to hurt I would get it looked at.  After a few weeks the numbness eased coming and going at random over the next 3 months.  I didn't actually mention it to anyone at the time.  I just didn't think it was that important.
     
    In an effort to shake the fatigue I tried cycling to work.  My mind shouted work but my legs refused to do the job, I remember at the time saying how strange it was I wasn't out of breath my heart wasn't pounding but my legs just refused to work.  So what should have been a getting fit first run 40min ride became a 85min nightmare.  I resolved to try again after some shorter runs, which I never seemed to have the energy to do.
     
    At the end of August while I was at work I developed double vision and caused myself a needle stick injury.  I was sent to our accident and emergency, where after examination they sent me to the eye hospital.  There I was told I had developed a weakness in the muscles controlling my left eye and was to wear corrective lenses.  Over the next few days things deteriorated until I was effectively blind in my left eye (in my opinion this was better than double vision, being much easier to cope with).  I went back to the eye hospital  they seemed very concerned.  I was thoroughly examined and given a diagnosis of Optic Neuritis.  They booked me in for an MRI the next day.  If you have ever worked in the NHS you will be aware that nothing happens quickly, especially if it's going to be good news.  The next day I went in saw the Doctor, and had my MRI.  He told me he would phone me with the results the next day.
     
    No matter how confused I get with other dates I will always remember when MS was first talked about.  It was September the 5th my birthday as it happens.  I was called at my house by the doctor.  He said the results were back but he would rather discuss them in person, asked if I had someone to come in with me, and told me he would see me when ever I could get in.
     
    I arrived, waited for a few minutes and was shown in to the consulting room.  The doctor told me the 'good news' I did not have a tumour, but that the scan revealed lesions in the white matter characteristic of MS.  He was careful not to make this a definitive diagnosis but rather a heads up.  He talked % and chances, I absorbed this.  I listened and asked a few questions maintaining my professional face until he said 'do you have a family' and asked about my son.  At that point some tears started to fall.  Looking back I know he was concerned for me, he wanted to empathise and know that I really understood what he was saying, but at the time it just felt cruel.  I met Karen after and we went to a pub, sat at a table drank some G&Ts and took turns to let loose a few tears.
     
    The time between September and February were filled with relapse after relapse worry and confusion. During this time I regained about 85% of the vision in my eye I still have double vision which I can just ignore now (well most of the time).  Then I lost sensation in my left leg/hand and foot, this partly resolved with oral steroids leaving me with a limp.  Next came loss of sensation on the right side of my face, right shoulder and left arm this resolved leaving some residual sensory loss.  I was referred to Ophthalmic Neurology, then Neurology. 
     
    After hassles and delays I went for a Lumbar Puncture mid December.  The procedure itself went smoothly.  Afterwards I had a headache but other wise I was fine.  The next day I just started to feel worse and worse until I asked Karen to phone the hospital.  They suggested we go straight to A&E.  This was the start of the worst 6 days I have ever experienced.  I wound up in intense pain and vomiting in response to any movement of my head from the horizontal.  The maxalon and morphine helped, unlike the near continuous stream of we are so sorry it's very unusual to respond so strongly to a LP. On the bright side I was so ill at the time I accidentally gave up smoking, so a silver lining in every cloud.
     
    I felt I was starting to recover by mid January and pushed to return to work.  I lasted precisely 1/2 a day.  The day after I developed loss of sensation and coordination on my right side arm, shoulder and leg.  Another course of oral steroids partly resolved this, I was left with weakness in both legs now and walking was becoming more of an issue.  My general coordination had also deteriorated.
     
    The results of the LP got lost for so long we complained to the division about the treatment and follow up from my admission.  Shortly after I was contacted by the MS nurse and things actually started to move with my treatment.  She asked to see me and arranged for the physio to be present.  We talked ,she took history.  She decided to bypass normal channels and referred me to the community physio team and an MS specialist directly.  The appointment was only a 3 week wait to see the consultant,a miracle for the NHS. 
     
    A few days before I was due to see the consultant I lost power and sensation in my right side again.  Walking was now a nightmare of effort and willpower.
     
    When I attended the MS consultant, he took history, give me a physical examination and for the first time said definitively I have MS.  He suggested my current physical condition was as a result of 5 relapses over the previous 7 months.  The rapid onset of each had not allowed recovery.  He then hospitalised me there and then for emergency MRIs and steroid Infusions.  The MRIs showed that there was progression since the last was taken in September and contrast showed I had 3 active areas.  He suggested that given the aggressive nature of my MS that Tysabri was the most realistic option for treatment, but if I was not comfortable with it we could explore other drugs.  I was given the information, we had a chat, he told me to go away and think it over.  While I mulled over my options my MS consultant cleared the funding for the Tysabri so it could be started quickly once a decision  was made.  I was discharged with crutches to assist my walking.
     
    I talked it over with my partner and we agreed that continuing to relapse at the rate I have been was not an option.  If with Tysabri I could go for even 6 months between relapses It would offer a vastly greater quality of life than what we are experiencing now.  The possible side effects of Tysabri are well known and I'm sure I do not need to list them here.  At this point I was thinking I have no real choice and this drug is quite frightening.  For days this occupied my thoughts I read everything on Tysabri, diary's, reports, trials, but nothing seemed to ease my worries.
     
    The consultant phoned and told me funding had been resolved and I could start infusions as soon as bed space was arranged.  Immediately like a switch going on my thoughts changed from side effects to what if it doesn't work.  To be completely honest the thought of getting back to my life with some sense of control overrides any concerns I may have had, and the risks seem somehow more remote.  I am aware this is just another form of denial, but it's the kind of denial that lets me sleep at night and think about my future with degree of optimism.
     
    I received a call from my MS nurse informing me that my Tysabri infusion was set for April the 7th at 9am.  While talking to her I mentioned that I had been experiencing pains throughout my body for awhile (about 6months) nothing seemed to help and asked her for advice.  She suggested Pregabaline, I discussed this with my GP who prescribed it for me.  I never knew just how much the pain was impacting my abilities until this drug took the edge off it.  It is amazing the difference this has made to the quality of my life.
     
    The two weeks to the infusion flew by and I looked forward to it, to starting some form of fight against my relapses, and the chance of some control.

    This is a snap shot of my life with MS and my experiences thus far.  As I said at the start I'm new to MS and my journey this far has seemed a whirlwind and a slog in equal measure.  I'm not hoping for a miracle from Tysabri just a degree of stability so that we can plan plan for our future.

    Richard

    5th May 2008 - Second Infusion
    Since my last post I have very busy with various hospital appointments.  Two months ago I was struggling to see a Neuro of any description, now I have an MS specialist, an Ophthalmic Neuro, a consultant in rehabilitation medicine, an OT, a Physio, and a lovely MS nurse specialist who gives me my infusions.
     
    Symptom wise my coordination with my hands has improved a little and my physical stamina has definitely increased over the last few weeks.  My legs and mobility continue to be an issue.  As I write this it has been almost 9 weeks since my  last relapse(a record since Sept), and despite some of my symptoms being stubborn over improving my general feelings are really positive.
     
    I was nervous over my second infusion, perhaps more so than my first.  I was told the second infusion is when they can see if you immune system will react against the Tysabri. On the day of the infusion every thing went perfictly once again.  The ward knew who I was, and what I was In for.  They even recognised me, staff stopped by to chat before and during my infusion.  I was pleased to see my MS nurse who carried out the infusion.  This followed the same pattern as before.  First the questionnaire, then the obs, then the infusion was started.  I had obs taken a few times during and after the infusion.  Every thing went well and my next infusion is Monday 2nd June.
     
    I've started the process of returning to work. They have developed a clerical role for me within the area I previously worked.  There is no way I could return to my previous duties, but I am so glad to be getting back a degree of normality to my life.  I'm only up to a couple of half days this week, but the effort and fatigue are worth it.  I'm using two crutches to assist balance and mobility, so it is fairly obvious to all that I have a degree of disability.  On the whole people have been very supportive.  I have mixed feelings over my return I'm delighted to get back, but it highlighted just how debilitating the last year has been on me.  As relapses have occurred I've just adapted my life to accommodate any residual effects.  Returning to work was a massive wake up call regarding my current physical condition. 
     
    I hope with Tysabri's help keeping relapses at bay I am able to push my self to regain more of who I was physically and perhaps return to a more clinical post eventually.
     
    Rick

    7th April 2008 - First Infusion

    The Infusion process was the single best experience of a hospital admission I have encountered as a patient.  To start, on arrival the ward knew who I was, what I was in for and were prepared for my arrival.  I was shown to a room and assigned a bed.  Within 10 minutes of my arrival my MS nurse greeted me and went through the formalities of admission, history, current health, base line obs, and an opportunity to talk and discuss the procedure.

    Once I was settled and comfortable the infusion was prepared.  A cannula (needle for IV drug administration) was placed in  my hand and the infusion process started.  It takes about an hour to run the Tysabri through and with the heat and my lack of sleep from the previous night I could easily have slept.  During the infusion obs were taken midway and at the end to ensure no immediate adverse reaction was missed.  Throughout the process the MS nurse returned, chatted, and generally kept a close eye on me, it felt very reassuring knowing she will be my contact in the hospital as well as intuitionist.  I remained on the ward for an hour after infusion then I was free to leave.  Before I left I was given my next infusion date, my med alert card, and a host of contact numbers.
     
    There were no immediate side effects to the Infusion, later in the evening I developed an uncharacteristic headache but some paracetamol and codeine cleared it up and it was gone by the next day.  If I can stay relapse free until my next infusion on the 5th of May that would be 8 weeks and my longest remission since September.

    Richard

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