View Single Post
Old 04-25-2011, 10:31 PM
Natalie8's Avatar
Natalie8 Natalie8 is offline
Member
 
Join Date: Apr 2008
Posts: 900
15 yr Member
Natalie8 Natalie8 is offline
Member
Natalie8's Avatar
 
Join Date: Apr 2008
Posts: 900
15 yr Member
Default

Quote:
Originally Posted by Riverwild View Post
Yay!!!!
I am so happy to hear that news! I know how much this was weighing on your mind.
Pop the cork and cheers!

Now, did you st and wonder how the heck you DIDN'T test positive?
I know when I got my results I was stunned because I have lived in many places and played in the dirt in other countries and swam in their water and eaten their food and played with their children and I figured if anyone would be exposed to some strange bug, it would be me.

Now I wonder if there's something in some people's immune system that helps them to fight off the virus and it doesn't remain dormant in their kidneys, but is eliminated by their immune system.
Yes, it has been bugging me since I gave the blood 4 weeks ago. And of course I think, well the whole time I shouldn't have been as anxious as I have been about PML (so much for attempting mindfulness! ) But I had this weird feeling that maybe I would test negative, or at least I thought it was possible. I didn't get Epstein Barr virus (mononucleosis) until I was 36. And supposedly everyone gets that as a teenager. And I got Cytomegalovirus later in my 20s (which is like mono in that a lot of people have been exposed early on and for immune compromised people it can rear up, such as in AIDs patients). And I don't have any herpes viruses like cold sores. So......maybe my immune system was able to ward off many viruses over the years??? Until I went on Tysabri I hadn't had a cold in 10+ years. And even then I've only have 1 cold in the past 14 years. But I do feel damn lucky!

RW, it sounds like you would have been exposed to something rolling around in the dirt and eating in other countries!! I'm sure as time goes on they will discover more about JC virus and how it operates. I feel optimistic that they have identified new experimental anti-virals which recently have seemed to help those with PML. I hope eventually there will be a way to treat PML if people get it.

Then again, my neuro told me I had to be tested in another 6 months because there is no guarantee that you will remain negative forever. AND...he also told me there is a 2% false negative rate. But those odds seem worth taking.

I'm just relieved as my body knows and tolerates Tysabri. I have been following people on Gilenya and it wasn't making me eager to try it. Hair loss, heavy fatigue, weird itching/tingling, and shortness of breath don't sound appealing.
__________________
On Tysabri and love it.
.
Natalie8 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
DizzyLizzy (05-02-2011), Grammie 2 3 (04-26-2011), Riverwild (04-26-2011), SallyC (05-06-2011), shayna (04-28-2011)