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

    Christine B's Tysabri Diary

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    Here is my MS road. I was in a car accident age 44 end of May 1999, went through physical threapy but never fully recovered. I was very athletic before, racquet ball, tennis, working out. At this point after the accident I kept trying to work out, middle of July after a good work out at the gym woke up next morning with a extreme weakenss in right side.  Called the doctor he ordered more physical threapy. PT didn't help just got a little better could walk again.

    Looking back I had my first MS attack at age 20, then in the following years about five different attacks where I would recover and have full strength back. During these times I would have weakness on the right side for one week to a month. I could still walk just dragged my right leg.

    Then in May of 1999 the change started.  My doctor diagnosed the previous attacks before 1999 to not warming up properly having done damage.  Everytime I fully recoved. But I always had a problem with heat and became fatigued easily when I was in the heat. I lived in California for many years. But in July 1999 I never did fully recover.  Then started the MRI and Spinal tap to diagnose the MS. I was devastated.
    Many years since I have struggled to get out of bed and walk.

    The following is the list of problems I had when I went on Tysabri, I was weaker than ever: I am still limited but better.

    Balance problems, couldn't stand on my own.
    Walking was a problem as I was weak in the right side, foot drag and foot drop. Couldn't lift my right foot too weak or do angle rotations.
    Each month I would spend 3-9 days in bed due to fatigue.
    Felt MS hug
    I had problems swallowing
    I used diapers and had no bladder control.
    It felt like I was wearing a cement raincoat, cement boots and a cement hat.
    These have subsided and I still have fatigue just not as bad. My bladder is just about fully recovered. Also My right leg is still weak and I have balance issues, just not as bad.

    In December of 2007 I fell and recieved a concussion. It set me back, I forget how I still need assistance to walk. I was holding on to someone who really didn't understand MS and they let me go falling on a cement floor.  But I am recovering and still doing great when compared with pre-Tysabri.

    I have learned that my MS reacts to stress and if I get stressed I get weaker. So that has been a lesson for me to grapple with. I have quit my job of teaching high school as I still take naps most days.  Usually just an hour nap but I wake up between 8-9AM. Used to get up at 5:30 and work out before going to work. swam or did areboics,  walked 3-5 miles a day, I hope to do that again!!!!

    My attitude is one of trust and hope that this is temporary and I know in the bigger picture God has done wonderful things and taught me too.

    Christine

    Update 15/04/09
    Since being on Tysabri my life has changed, I cook again, clean, drive, I am stronger and although I have my bad days, I feel alive most days. I used to spend hours on the computer but now have energy to do things. (I also take amantadine, which I did pre-Tysabri too).

    If I could walk normally again it would be wonderful. But my balance is poor. And my leg does go weak without notice.  I still take naps but not as long daily. 

    Most of the time Tysabri reminds me of being on steroids before where I have slight improvment. I will take any improvement. 

    More strength and can take steps on my own.  But only like 5 steps.. still better than before Tysabri and a wheel chair.  I think I am on Infusion #23, lost count I just do it.  Easy easy.. side effects last 24 hours then boom I am back for a month.

    If this is how it is with Tysabri then I can't imagine what else could be in the pipeline, we have hope. I have faith God will allow doctors to grow and learn here!!! I believe it is totally in HIS hands.

    Christine

    Christine B's Update 26/06/08
    I have had 13 doses of Tysabri, before the first I used a wheel chair and could walk 35 feet with a walker. I could stand sometimes if any for about 5 minutes. I had to hold on to things to stand.  Stairs were impossible and I fatigued easily.

    To date I have improved from a wheel chair to walker to fore arm crutches, I swim for around 35 mintues and I can swim again kicking too. Which is remarkable. but I do rest in-between a few laps in a small pool. I walk with my crutches to the pool and back again. Although I am still limited I can do more than before starting.

    I now drive again and cook.  My hands are much stronger. the last test with my PT showed remarkable improvment everyhwere except my hip area. that is still weak, I also take amandatine and 4-ap daily. That is all no more baclafen, or anything for vertigo.

    Sometimes I have pain but it is nowhere as bad as it used to be.
    I also have one one and half inch lesision in the spinal cord and a tiny tiny spot in the brain. that is it.

    Although I am no where near normal the little improvment is great. I am praying by the end of the year I will use a cane.

    I have my next IV July 9th and will update later. It took a full 3 doses to see any improvment and each dose brought new improvment.

    hugs, Christine

    29th June 2008

    Today June 29th I walked with my fore-arm crutches on grass at the beach for the first time in 5 years. It was so fun; I was so excited I am sure others thought I was a little crazy.

    Someone saw me and said worried,  “Are you okay? I am so sorry to see you like this that I used crutches what a pity.

    Probably thought my tears were sorrow, but they were joy. 

    I said just the opposite, I feel like a teenager who just got their license. This is freedom, walking with just crutches on uneven grass. FUN FUN on uneven grass up a hill at the beach, freedom, fun!!!

    Christine

    Dose 16 - August 16th 2008

    I had dose 16  August 6th.

    I visited a castle with friend and walked from the parking lot into the castle and walked around the castle. This is amazing, no more wheel chair.

    Yesterday I went up and down our stairs not once, not twice but three times.  I walked around the basement, with support and cooked and cleaned. I have noticed more stamina and balance, even though it is slight it is there. If this continues I should be stronger by next summer. 

    I am due for dose 17 on Sept 3rd but will be in California. I am going to have to wait to have it till the end of September. I will let you know if that makes a difference? 

    Thanks, Christine

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