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

    Patti's Tysabri Diary

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    Patti, MS Survivor, Tysabri User
    Born in Mercer County, NJ
    Married 14 Years, 4 Children, 2 Dogs, 3 Cats
    Expecting our First Grandchild in April 2008
    Dx'ed 10/86

    MS doesn't make me who I am.  Use it or lose it :)

    I was due to start Tysabri 3/2005, it was pulled from the market 2 days
    before.  Two years, six months, three weeks later! Wooooooohoooooooo, found
    a Doctor and site!  I had my first infusion 8/23/07 and here the start of a
    Great Beginning!

    12 Bells

    Well after thought, actually 12 infusions is not a year.  So the celebration will be in August :)

    The 12th  infusion went well.  I had a big of an upset tummy for some reason...... could be the heat, or planning a large family reunion for this weekend.

    I didn't sleep well during the night, but again, there a ton of thoughts going through my mind.  I was cold too....... till I ate some lunch and now I feel good as new, well a few years newer :)

    So once again a success!

    The person before had just got their 19th!  Can't catch up, but will try :) 

    Patti

    Patti's update 06/03/08

    6th March 2008 was my 8th Tysabri infusion.  I must say one week before I stood up from my bed and walked to my bathroom, with no walker or cane, just held on to the dresser and other things on the way! 

    Ok, the #8 infusion went very well in procedure as usual.  Used the left arm again, very comfortable.  I had to stay the complete two hours...got bored, did you know the O2 sensor works on your nose, but not your ears?  Something for you to try.  The book you need to read before you start has changed, liver this liver that.  I don't even like liver.

    I had a complete blood panel on 2/24, my liver is good, no onions. :)  I really haven't talked much about when I get home after the infusion.  I am really cold.  Really cold.  Takes about 40 minutes to get home.  Has been like that since #1, lasts about 2 hours.  Nobody has ever really said what to do after the infusion, go shopping, out to eat, or come home and get under the blankets.  Nobody has really said what to do the next day.  I feel some body aches about 48 hours later, last about 48 hours too.  A nap on both days and some Advil.  I go to the Big "Kahoka"  on Wednesday, 3/12.  My Birthday is Monday and I feel so much better this year then last.  Thank the Lord! for Tysabri :)

    My grandson is due here in April, no chance for an Easter Baby.  Well till next time, thats all folks!

    Patti

    Patti's update 16/02/08

    I am not sure what that means, but I did my 7th Tysabri infusion on the 7th of this month.  I must say as far as the IV start it was painless.  I asked if she could look at the left arm for a vein, the right one is a bit sore.  By golly she found a really good vein!  I didn't even feel it., much, lol

    Everything went as usual.  Friday evening, I was doing dishes and turned to get something and it just came over me, I should try to walk, unassisted!  I have been using a walker for over a year not.  So hey, you never know unless you try!  So I did!  I walked about 8 baby steps!  woooohoo!

    It was awesome.  I haven't walked in so long, I forgot what to do with my hands!  I must say, every time I do an infusion it just gets better and better...... Simply amazing.  It has been a Blessing from God, that is for sure.  So waiting for #8!

    I will try harder to keep you posted!  But I feel so good!

    Patti

    Patti's Update 15/12/07

    Where does the time go? 

    I received my 5th infusion on Friday, a day later they planned.  Just too much snow on Thursday.  Any how, it went very well.

    It is an excellent infusion center and I can say enough about the nurse I
    have.  She is great!  I must say, I do have a small headache today, the day after.  Nothing that a few Advil won't take care of :)  I love this stuff!

    Went to the Tysabri neuro on the 12th, he is leaving so I will have a new one in March.  He said I was doing ok, see ya.  More or less.

    I did take 5 or 6 steps with my cane on Thursday.  Felt like I ran 12 miles, lol.  But I will do that every day.  Sure would be great to can the walker

    :)  Everyone Happy Holidays! At least this year I feel good enough to enjoy the season!

    Patti

    My first infusion

    I started Tysabri in August of 2007.  Finally.  After 2 years, 6 months, 3
    weeks just trying find a prescribing physician.  I was 2 days away in 2005
    from starting and now that neuro isn't the program. 

    To make a long story short it was worth the wait!  I have had four infusions,
    my next being 12/07.  I will be able to give you the play by play for a couple
    of days after.  I just know, I love this medication.

    It is working well for me.  I know, only four infusions I am doing a lot
    more small stuff then before.  My fatigue level is dropping too!  That is a
    plus :)  So after the December infusion, I give up the details.  I must
    admit I can't wait till the next one, but the day of I get nervous.  I am
    not a big fan of needles.  But I am a big Fan of Tysabri.

    22nd August 2011

    I have not posted anything for a very long time! 

    But this month is my 4 year anniversary being on Tysabri. 

    Where did that four years go? 

    I am still doing well with it. 

    I had more improvements in the first two years, now I seemed to have leveled off, but hey not worse. 

    So in a nut shell I am in better condition then when I started :)  and have remained that way!

    So Happy Anniversary to A Wonderful Four Years!

    Enjoy!!!

    Patti.

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