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

    Amy Kristine's Tysabri Diary

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    *Diagnosed on 12/9/1998 (my 35th birthday)
    *Took Avonex 12/2000 - 12/2002
    *Took Copaxone 1/2003 - 2/2008
    *First Tysabri infusion 4/8/2008
     
    *Mother, now deceased, had Multiple Sclerosis also
    *It was suspected in March of 1998 that I had MS but the neurologist from whom I sought answers told me, "If you have MS there is nothing you can do about it anyway." I know that such advice is now difficult to believe, but I will never forget it! Obviously - I found another neurologist.

    2 October 2008 - My Seventh Tysabri Infusion
    Hurrah! My husband has noticed improvement in several of my symptoms. (I had also but needed a more "objective" assessment.) The improvements - probably due to Tysabri - combined with the accommodations that my boss has made for me, my everyday life seems more joyous and less struggle filled.

    Heat intolerance is still one of my biggest problems and since each of our operatories has a skylight, the rooms become too warm for me as the day progresses. The office manager and dentist have insured that I have patients scheduled only in the mornings now. How wonderful.

    My next infusion is 30 October. I have high hopes. I also hope that anyone reading this experiences positive improvement as well.
     
    Amy Kristine 

    [email protected] (Put Tysabri in the subject line so that my spam filter will not kick your message out!)

    5 June - 2008 - My Third Tysabri Infusion
    The dark side? Nothing has improved. The bright side? Nothing has worsened.

    As my neurologist says, "stability in this disease is a win."

    So I have gotten more reasonable with my expectations. As I read other diaries I am truly happy for those who have experienced improvement, be it major or minor. You give us all hope. And I also want to thank those who have written with encouraging words. Thank you for taking the time to do so.

    Amy is willing to correpsond with others who are on Tysabri, or thinking of starting the drug. She can be contacted at [email protected]

    8th May - 2008 - My Second Tysabri Infusion
    My Second Tysabri Infusion
     
    I have been silent, waiting for something to report. I'm still waiting. My symptoms seem exactly the same as when my neurologist switched me from Copaxone to Tysabri. I truly wish that I had something more encouraging to share. I have an appointment with my neurologist next week to discuss the medication's lack of effect. This may end up being the shortest Tysabri Diary ever!
     
    Amy Kristine

    8th April 2008 - First Tysabri Infusion
    I was scared. I had gathered quite a bit of information about Tysabri (that is how I discovered these diaries) and even watched a Tysabri infusion on You Tube, yet I felt under prepared and unsure of what to expect. Worse - I was alone. My husband was out of town, so I drove the 45 minutes to the infusion site by myself which gave me way too much time to over contemplate.

    The infusion itself was a lovely anti-climax. I had the opportunity to read an enticing book for one hour and was only interrupted by the taking of my blood pressure and temperature every 15 minutes.

    10 days on  and I am watching like a hawk for any change in my symptoms. So far, nothing exciting to report.
     
    What I learned for next time....
        * I have no need to be so nervous.
        * The better hydrated I am -  the easier the IV will be to place. (I was not well hydrated last time due to my limited bladder time!)
        * I learned that I can accommodate my "45 minute bladder" because I can walk the "IV tree" to the bathroom with me.
     
    Any one who wishes to contact me may do so at the following address
    [email protected]

    8th April 2009 - One Year Anniversary
    Forgive me for this will sound a bit like an advertisement. One year after starting Tysabri I can report that my liver enzymes are the best they have been in years.

    Apparently my body tolerates Tysabri better than Avonex or Copaxone. I am still working as a dental hygienist. (A year ago I feared that I would not be.) My husband - always a more objective observer than myself - has noticed a marked improvement in my symptoms.

    Of course, a direct correlation is assumed but not proven. All I know for sure is that I am much more hopeful now than I was a year ago. I believe I have both my husband and Tysabri to thank for that!

    If you would like to contact me, you can via [email protected] with Tysabri in the subject line.

    Amy

    25 November 2011

    Wow! Much has happened since my last update. I am still on Tysabri (3 years and 6 months after my first infusion.)

    I will be taking the JC Virus anti-body blood test next month.

    I had to stop being a dental hygienist because my MS heat intolerance - exacerbated by menopause - began to interfere with my fine motor skills. I find swimming to be the best exercise for me because I am able to keep my body temperature down. I swim at the local community college in an outdoor pool.

    I truly feel that Tysabri, a sympathetic husband, and an understanding boss enabled me to work at least two years beyond what I would have been able to without them.

    Anyone with questions for me about my experiences with Tysabri is welcome to contact me at [email protected] (please note that this is a new email address).

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