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

    Emma's Tysabri Diary

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    Hi, my name is Emma and I am 27 years old. I am married to Nathan and have a 6 month old baby girl called Ava. I am a primary school teacher and was diagnosed with MS in 2006.
     
    Previous Medication: Baclofen, Kepra and Rebif from Nov 08 to March 09
    I am not currently taking any medication
     
    My MS History:
     
    First symptom (2000): Optic Neuritis - In me, I lost my sight and went completely blind for 3 weeks. My sight came back but still a little like I've looked at the sun in the one eye. I now wear glasses for long distance.
     
     I have since had several relapses including slurred speech, numbness in my legs, the MS hug and problems with balance and walking.
     
    My main problems:
    Walking and balance
    Dexterity in my hands
    Numbness in patches from my waist downwards
    Uhthoff's Symptom: An increase in symptoms due to exposure to heat, my eyesight gets particularly bad
    Cold hands and feet
     
    Whilst pregnant with my daughter I relapsed affecting my balance. Since having her, I started Rebif and appeared to have several relapses whilst on it. My MS has been highly active and disabling since having Ava which is why, in agreement with my neurologist, I have decided to give Tysabri a go. If Tysabri stops my MS from getting any worse then that will be fantastic, but as with most people on Tysabri
    there is a little part of me that hopes for an improvement in my symptoms. Watch this space...
     
    I also write a blog about living with MS:
    www.emmalouiserichards.blogspot.com

    Final Diary Update 29/11/11
    I have just read my last post on my Tysabri diary and am apalled with myself for not writing for so long! I am now 30 and Ava is 3!! I have now had 30 (ish!) infusions of Tysabri and am a different person as a result. I don't know if it was the C-Section I had with Ava or just bad relapses, whatever it was meant that after Ava was born I could not leave the house unless I was in a wheelchair. I now walk out to the car just holding an arm or wall. What a difference!
     
    I was so bad after having Ava, that every night was a chore to get up stairs, I had to go up on my bottom and crawl to my bed. So we decided that we had to move to a Bungalow. Now ironically I could manage stairs!! Anyway, I went back to work a year after having Ava for just a day and a half a week as school were not sure how I would cope (as I am a teacher). I managed a year, not moving much from my wheelchair. But then they offered me 3 days a week the following year, so that's what I do now. My days off are spent running Ava to various playgroups, ballet, swimming etc!!! I can now manage to go out alone with a frame. I can lift it in car and then get a scooter wherever I go. I drive a hand controlled car which is fantastic and it has a big boot for all my equipment (Zafira).
     
    Reading my old posts back, I have realised how much my life has changed. I was housebound and didn't move from the sofa unless I had to but now I go swimming, I teach, I take Ava out and about. I have a wonderful family and friends who support me and encourage me. It must be the Tysabri, so all of you on it - keep going, there is hope! I am now waiting for other medication which could potentially help my walking, now that would be a miracle!
     
    Emma x

    3rd and 4th Tysabri infusions
    Hello all,
     
    Since my last post, I have had another two infusions. They were my 3rd and 4th, but the 4th came a little earlier than expected. After my 3rd infusion I felt awful, very tired for the 3 weeks that followed. I can normally manage to walk up our stairs at night but this month I have had to go up them on my bottom. I don't know why this has been the case. It might have been the very hot weather, or just a bad month.
     
    Anyway, I was supposed to have my 4th infusion next Monday but this Monday I had a phone call to say could I go in tomorrow (Tues)? After lots of negiotiating, I managed to get in for it. I felt very tired on Tuesday night, but have been feeling much better since. My walking seems to be a lot better but we will see, don't want to jinx any effects! One thing I have noticed since being on Tysabri is that my body seems a lot hotter and my skin feels very hot. I also seem to get a lot of facial flushing. But overall, I am persevering with it with more hope than I've ever had, so it can't be that bad!!
     
    Next infusion: 17/08/2009

    Infusion No. 2
    Hi everyone,
     
    Well since I last wrote after my first infusion, my life had been somewhat eventful to say the least! The fatigue I had after my first infusion probably lasted about a week. I wouldn't say I noticed any great improvements after that, but I did manage to walk up the stairs in two go's (5 steps then 6) which I haven't been able to do for a long time. So, that gives me hope!
     
    For those of you who read my blog, you will know I had a little hospital stay just over a week ago. I started feeling unwell (with PML running through my head!) and to cut a long story short I ended up in hosptal with a severe kidney infection. I am prone to getting them but Tysabri suppresses your immune system so if you are susceptible to having them you may get more! I stayed in for 5 days and was eventually released with further antiobiotics. Then about a week later, a day before my next infusion, I felt familiar symptoms so was put on more antibiotics to make sure the infection didn't come back.
     
    I went to the hospital on Friday morning at 9, only to be told by the nurse that I probably wouldn't be able to have my infusion because I was on antibiotics. I waited for my MS nurse to come up and he said that he was happy I looked well and after speaking to my consultant, if my urine had no white blood cells in, we could go ahead. It was clear and I had the infusion....yay! 4 days on and the fatigue I had initially seems to be going quicker than last time. We are off to France for our first holiday with Ava in 2 weeks (armed with precautionary antibiotics!) and my next infusion is on June 29th when we return. Bye for now!
     
    Emma

    Infusion No 1 27/04/2009
    Well it is my first infusion tomorrow and I can't sleep. I am excited but also a little scared, I think it is the fear of the unknown (and of course the dreaded PML!). I think you are convinced that the minute you are hooked up to the drip, you are going to have a bad reaction and you'll be really poorly (well that is what I thought!). Although the reality is a lot less scary and the side effects at the time are relatively minor.
     
    So, the day of the infusion, we got to the hospital to find I am only the 3rd person in Gloucestershire on Tysabri and the other 2 were already there getting hooked up. They have seen great improvements after 7 infusions so I am already hopeful and can't wait to get started. My MS nurse asked if there was anything I wanted to know and did all the blood pressure and temperature checks. Everything was fine so they tried to find a vein...it was like finding a needle in a haystack! 3rd time lucky and we were up and running.
     
    I got a little flushed during the infusion but felt fine. I stayed for an hour afterwards to be monitored and all was fine. It was the next day the tiredness hit me. I could hardly do anything and now writing this 2 days on, I am feeling much better. No change in my symptoms, just in my attitude...I live in hope!
     
    Next infusion 29/5/09

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