I'm Positive

My current MS therapy does a wonderful job of slowing the progression of my MS but it also carries the risk of developing a serious brain disease called Progressive Multifocal Leukoencephalopathy aka PML.  Some people carry a virus in their body that makes them susceptible to this disease.  For those that do not have the virus, known as the JC Virus, there is no danger of developing this brain disease known as PML.  However, a person that is currently negative for this virus could become positive in the future.  Doctors do not know what causes it or what exposes people to this virus.  About 2 years ago, I discovered that I carry the JC Virus.  It was the result of a study for people with MS who use Tysabri as their therapy to slow the progression of this disease.

Before I ever decided to begin using Tysabri, my MS was very aggressive and out of control.  The treatment I was on at the time was not working very well.  I was having relapses every other month.  I had to go on high dose steroid treatments via IV several times.  Eventually my neurologist decided to send me to UCSF and it was there that a doctor highly recommended Tysabri because it was the most aggressive treatment for MS at the time.  And it still is.  I was aware of the risks due to an ad for Tysabri that I saw in a magazine.  The first time I ever read about Tysabri and the possible side effects, I vowed to never use that drug to treat my MS.  That was before my quality of life began to quickly tumble down hill and I felt completely out of control.  Eight months after being diagnosed with MS, I found myself facing the decision to take a risk.  It was a little difficult at first because I never imagined facing a decision like this less than a year after being diagnosed with MS.

I have been on Tysabri for over 4 years now and I'm still doing very well.  Tysabri doesn't stop symptoms of MS, let me make that clear.  I still experience numbness in my right foot that increases when I'm stressed or tired.  I still have to take nerve pills to prevent me from feeling all the nerve activity in my body.  Fatigue has been a huge issue for me since my diagnosis but I have good days and bad days.  My short term memory is not what it used to be but I know I can do certain things to exercise my brain to help me not forget everything.  Overall, I am positive.  Even though tests show that I am positive for the JC Virus, that's not all I am positive for.  I'm positive about my future with MS.  I have MS but MS does not have me!

A Day in The Life

   Today was a good day.  I had my Tysabri infusion which I get every month for MS therapy.  It's actually a good time for me to just unwind and chill for 2.5 hours.  I sit in a recliner and I usually bring a book or my journal.  I always do my therapy first thing in the morning before I go to work from 8:30 to 10:45 or so.  It seems like the months fly by and before I know it, it's time to go back.  I have a great relationship with my nurse.  We spend the whole time talking about our families and our back ground.  She is Philipino and she lived in Nigeria for 6 years.  Her father was in the military so they traveled a lot.  She has been all over the globe.  My new nickname for her is "The Globetrotter".  I have never been out of this country, which is fine with me.  I would love to go to Paris or Tuscanny but I'm just as satisfied watching Under the Tuscan Sun or the travel channel.  I'm more interested in seeing the places than actually being there.
 
     After the infusion today I had a giant burst of energy and my day at work went very well.  I usually get pretty tired between 11:00 and 2:00 but not today.  By 5:00, I was still feeling great.  It's not always like that.  Sometimes it's just the opposite.  I was a littlle shaky after my therapy today.  I need to make sure that I stay hydrated.  Once I got some food in my system, that went away.  I am so grateful for this treatment.  It really makes a difference in my quality of life.  God is always blessing me left and right.  To be able to work and to still have a job is a major deal right now that I do not take for granted.  I really love my job and having MS does not prevent me from being able to keep up and do a good job. I don't even want to imagine what my life would be like if it wasn't for God's favor.  I know without a doubt that I'm doing as well as I am because of Him.  I feel like I can do anything, and most of the time, I do exactly that.