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 » Emma's Tysabri Diary

    Emma's Tysabri Diary

    A A A
    [Print this page]

    Share |

    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:

    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!

    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 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

    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
    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
    Tony'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.