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

    Kara's Tysabri Diary

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    Born in Indiana, grew up in Calgary, Alberta Canada, now live in Wisbaden Germany (no I am not with the military ; ))

    Diagnosed: April 1993

    Previous Medications
    Started medications after having children in 2004

    LDN one year (stopped because I did not think it was helping)

    Copaxone one year (a large lesion formed on my left side of the brain during this period stopped the medicine)
    Steroids to shrink the lesion the size of a golf ball (everything is golf related for me)

    Tysabri 55  infusions and counting.  So far I love this stuff!!  In Germany the infusions only take 15 min and then I can leave.  Where as in the States its one hour for the infusion and one hour of monitoring. 

    I was diagnosed when I was graduating from college.  I was on a golf scholarship and had to have a physical at the end of my term.  I would have never had gone in for pins and needles feeling in my leg and arm at age 23, I would have just blown it off.  It was a very determined trainer who got me to a neurologist twice before finding out it was MS with a MRI and a spinal tap.  They said I was benign as I had no real symptoms except for some tingling in my right leg and arm which went away in 1994. 

    Symptoms started after my second child and got worse after my 3rd was born, so about 2003.  So I am now Relapsing/Remitting.  My right leg started going weak about 7 years ago and I started walking with a cane just this year.  I can walk without a cane, but I just walk with a limp (but my husband prefers me to use one). I cannot lift the ball of my right foot off the ground or lift my heal towards my back more than a 90 deg angle. My right hand started getting weak about 3 years ago.  My right leg and hand are cold to the not know if that is MS related or not...I am sure it is.

    Update 5th December 2011

    Its been a few months since my last update.  I will be going in for #62 this week.  I had blood drawn in October to see if I was positive for JVC to contact PML.  It was a long 8 weeks waiting for that test to come back.  Last month I found out that I am negative for PML.  I started crying in the doctors office.  Did not think I was going to have that type of reaction.  I always think I am so tough and that I can handle all this on my own.  It is at times like that where I know I will be running home to my husband after my appointment for him to give me a hug as I cry happy tears.  So I do plan on staying on Tysabri for a while longer for sure now.  Still have not had one flair up on Tysabri since starting it 5 years ago.

    I also started Famprya here in europe (Amprya in the states), 3 months ago.  My right hand got stronger.  And when I was at the gym doing a leg extension I noticed that my  little toes, (not just my big toe) was sticking up in the air (on my right foot).  I always wear out a hole in my gym shoe where my big toe is on my right side.  It is the only one that can lift up!

    So I started physical therapy 2 weeks ago to strengthen the tiny ligaments and muscles in my right foot to see if I can get more usage out of it.  I will see where this takes me after a few months.


    Just had my 55th infusion today. 

    My last infusion was 5 weeks ago.  We had some problems finding a vein that day.  I had been sick for a few days before my appointment so I was malnourished and dehydrated.  Two things you do not want to be when someone needs to find a vein.  It took them 6 attempts to finally get the needle to work.  My doctor told me he wanted me to think about Gilenya while he went to HI for the big Neurology meeting the last week of April.  After being on many chat and support group sites I decided I wanted to stay on Tysabri.  I found others that have been on Tysabri for as long as I have, so that was helpful.  There are not many of us out there.  I have not had the JCV test yet, but I am sure I will stay on if I am positive to the virus.  Tysabri just has been easy for me.  No side effects.

    Before I started Tysabri my walking was getting bad and my so was my balance.  I could not swing a golf club, and that is my passion.  So I stopped Copaxone and started Tysabri as soon as it came on the market the 2nd time.

    My walking became better after 2 infusions and so did my balance and strength.  I still have weakness, but it is not as bad.  I go to the gym to train at least 4 times a week with weights and cardio. 

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