Thursday, June 13, 2013

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!