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

    Diane's Tysabri Diary

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    Hi All,

    My name is Diane, I’m 51, and I live in the UK.   It all started in 1999, when I woke up one morning with a terrible headache, got up and fell over and then I was valiantly sick and lost of the feeling down the left side of my face.  This went on for a few days, so called out the GP, who said it was a virus and I’d get over it. 

    I did get over it, although the left side of my face remained to be numb for a couple of months, however, thought no more of it.   Then some four months later the same thing happened again, but much worse, that episode lasted a few more months and left my legs feeling a bit funny. 

    I knew something was not right, so went back to the GP, who referred me to a neurologist.  A couple of months later, after blood tests and scans, the neurologist asked me did I want the good news or bad news first.  The good news it was not a “brain tumour”, but the bad news was that it’s “MS”.  

    I knew nothing about MS, and remember walking down the hospital corridor crying and my fiancé saying, “well, that’s good news!”, and I said “GOOD NEWS”, I don’t call it that!  What he meant to say was that it was good news that it was not a brain tumour, as my father had previously died of that. 

    The neurologist arranged for me to have IVsteroids for three days, and I seemed to recover really well.   After that, I then went six years without a thing, leading a normal life, working full time, ( in a very stressful job) walking, driving, dancing, housework and holidays and just doing normal everyday things. 

    In fact in those six years, got married (husband married me with MS) and moved our home (wrong thing to do) and everything seemed to be going well.  Then bang out of the blue had a major relapse that ended me up in hospital completely de-hydrated and losing the use of my left side of my body from head to toe.  I could not sit up straight and kept falling over to the left side.  In fact I was so ill that I just laid in hospital and my husband knew that I would not get over this relapse very easily and put our home on the market to downsize, as he knew that I would never be able to work again, and we had to free ourselves from our huge mortgage and had to move to another area as well.  I would have normally complained like hell, but was so ill, just said “ok”.  We were lucky that we had a lot of value in our home and we would be able to downsize to a bungalow.   

    If my first neurologist had told me when I was first diagnosed that I could get so unwell, we would have moved then, instead of waiting until I was really ill.  

    However, after moving I was put on Rebif, but it did not seem to agree with me, then one morning just woke up and couldn’t see!   It was then my husband had to give up his work to care for me.  I was convinced that it was the rebif, as I had been getting worse after each injection.  I just seemed to having one relapse after another, so I was taken off of rebif.   In total I had 11 relapses in a year, basically one a month, and my recent brain scan was not looking good and was referred to be considered for Tysabri, which I now start on 13th May 2008.

    MAIN SYMPTOMS 

    Worse than a never ending Freddie Krueger’s nightmare for more than three years

    • Balance and co-ordination problems.
    • Dizzy.
    • Trouble doing finer things/husband has to cut up my food.
    • Headaches now and again.
    • Numb left side of face.
    • Very poor eyesight in left eye, everything pale in colour and patchy.
    • Right eye has a squint from an early age, so have never been able to see much out of that one.  
    • Numb left arm weak and very heavy.
    • Severe numbness in both hands and pins and needles.
    • Numb heavy and very weak legs.
    • Bladder hesitation and numb lady parts.
    • Very weak bowels (urgency).
    • Unable to wash and dress myself without help.
    • Stagger with a stick, bouncing off the walls.
    • EDSS = 5-6  

    Tysabri Diary – Infusion No: 3 - Date of infusion 8th July 2008

    (LAST DIARY ENTRY)  
    Well, what can I say, the third infusion was a disaster! 

    Within two minutes of going on the drug, my husband knew there was something not quite right about me and  said  “what was wrong”, and quickly turned off the drip machine (as he knew how to do that from his emergency medical training) and ran and got the doctor and nurse.  I had turned a brilliant shade of red and was very hot and was having real trouble getting my breath, and I had pains in my chest and a nasty pain down my left leg. 

    Two nurses and a doctor ran in and said I was having a very bad reaction to the drug, and very quickly gave me some antihistamine to counter-act the Tysabri.  I was then shaking like a leaf and could not stop shaking, so they took my blood pressure and then quickly took off my top and attached me to an ECG machine to monitor my heart.  They worked on me for about half an hour and slowly my breathing returned to normal and the redness wore off, although I was still shaking for a long time with shock I think.  They had a shot of adrenaline ready to use and a defibulator (a heart shocking machine) if I had not responded to the other drug. 

    My neurologist arrived with another neuro and said I had reacted extremely badly, and they had not had this before (trust it to happen to me, I had to be the first).  So basically my body had rejected the drug and it could not be used again.   Although a lesson learnt for other users and the doctors, as they did say they should review the emergency procedure.

    It was a very scary experience and of course very disappointed and shocked with what has happened, but someone had to be the first!  Never thought it would be me!  So my Tysabri journey has ended very quickly after two treatments.

    Diane

    Tysabri Diary – Infusion No: 2 - Date of infusion 10th June 2008 4 weeks to 7th July 2008

    The infusion went well, no headache this time, which was good, although the infusion took longer, as I was in a different ward and they were not as streamlined as the first ward.  By next month there should be a specialist nurse assigned, so the infusions should be improved.

    A doctor arrived and asked me if there had been any problems, and I asked about my teeth sensitivity, but he didn’t seem to think that was a problem, although he did check with the neurologist, and then we got the go ahead to proceed with the infusion.  

    They took my bloods, and the doctor said they have to check your bloods every month as a precaution.    The doctor got the needle in first time, so no messing about with different veins this time. 

    There were a crowd of students who wanted to ask me questions and do tests, do I did not object. They seemed fascinated with my eyes due to the squint in my right eye; even the teaching neurologist seemed baffled!  As although my left eye has been affected by MS, the right eye does not respond as it should, so quite a quandary for the students, and it should give them something to write about! Apparently I’m quite a rare and unusual case, and the teaching neurologist mentioned that he will bring other students back another time to show my case, so I have to be different from everyone else! Although I don’t mind helping, as the students have to learn. 

    My walking seemed a bit better, one day, but then was back to the wobbly stagger the day after.  It seems as though something is trying to get through the damage, but then the brain just gives up!  I have also started to feel unwell again, which is not good, so don’t know what’s going on!  It’s so frustrating and a tad disappointed, I don’t expect miracles, perhaps I am too hard on myself, and expect too much. 

    Diane
    Next infusion date: -8th July

    Tysabri Diary – Infusion No: 1A (days 8-27) - Infusion date 13th May 2008

    Well, nothing much to report from days 8 to 27, apart from sensitive teeth and gums.  So went to the dentist, but nothing was wrong, so it must be the drug, as I found out it does cause sensitivity in the mouth,  I hope I don’t have that every month!  I am going to ask the Doctor about it tomorrow,  if I get a chance.    So now just waiting in anticipation for something to happen, every day I wake up and hope, then my hopes are dashed!  All I can think of, is the damage is so bad, not even the drug can help my symptoms at the moment.   I know the consultant did say the damage was extensive, but I do still hope that something will happen.  Am I just wanting and wishing too much, other people seem to have wonderful results, trust it not to happen to me!

    I have found that my left arm was less heavy for the first two weeks, but now I am starting to feel a bit unwell again, so I am ready for the next infusion.    All I require is a normal sort of life for myself and my husband, not a lot to ask you may think.  Still must remain positive, as positive relates to possibilities and negative relates to nothing.

    Diane
    Next infusion date: - 8th July

    Tysabri Diary – Infusion No: 1 (days 1-7)

    Well, the day came at long last.  Had to get up early to get on the road to London from the South Coast, and of course caught all the commuter traffic!  A bit of a journey up there, took nearly three hours, but arrived safely.
    The consultant came to go over a few things and gave me the information pack, as he had not had one to hand before the treatment day. 

    He told me that the body can reject the drug anything up to the first four treatments, so will be a bit of a worry  for the first few times.  

    The nurse came and put a cannula in my arm, but didn’t seem to get it in right.  They always have trouble with my veins, as they are not visible enough.  So a more senior nurse came over and put the plastic needle in. 

    My husband said it was good that the first one was taken out, as he could see the vein was puckering up, and he would have said something if they had left it in.  (He used to be in the medical profession, before giving up his career to look after me, so he knows his stuff). 

    The infusion went well, took about an hour and had a funny taste in my mouth, but nothing than a bar of chocolate could not put right!  The nurses then watched me for an hour, coming over and taking my obs and asking if I felt ok.  Just before the hour, they said I could leave, so we made or way back home.  The traffic was better travelling home and took about two hours going back.  Had a slight headache on the way home and the next day, also felt a bit sick, but nothing much.

    Felt alright the next day, but felt really tired.  I think the journey to London had caught up on me.  I got really excited on the third day, as my hands and feet felt as though they were coming back to life, and not so numb.  But the next day, the numb feeling was back, so excitement over for the time being.   Although my husband has noticed that in my face, I did not look so drawn, had a sort of glow about me he said.

    I found out that I was on only the 2nd batch of people to start the treatment at the London Hospital, and that there was 26 people on the list so far, to have the infusions.  From next month a new nurse has been appointed to do the infusions.

    Not much else to report at the moment, symptoms very much the same.  Will report if anything changes.

    Diane

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