Natalie, EXCELLENT NEWS Happy for you!!!
Linda

Here are some more detailed statistics on PML risk released by Biogen at the AAN.

http://www.medpagetoday.com/MeetingCoverage/AAN/25972

Linda, I think this might answer your question about risk with 2 out of 3 factors.

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.

best of luck in CO linda! thanks

#52 down!
As usual, no problems, no concerns.
Pending results from my test for JC antibodies, Doc has agreed that we can switch to a 6 month schedule for appointments, rather than every three mos.
I'm healthy and happy and four years relapse free!!!!

He also said if my cost is too high when my company throws me under the bus (they are dropping my full service plan because ANTHEM #$%^& refuses to negotiate on any other plans because of my plan) that he will stick me in the corner and hang a bag right there.

Hope I see some of you after tomorrow! If you are expecting to be swept up, please leave all your money to me, I'm going to need it since I am sure I will still be here!

Life is still good!

Happy for you RW
Hate what your insurance co is doing
Fri I had # 55 I've been on Ty for 4 years 8 months but changed my infusion schedule, so soon you'll be ahead of me
Linda

I'm in the infusion room now getting #28. First infusion post negative JCV antibody test! It's nice to have a relief from the anxiety of PML, at least for now. Will get another test at the end of October. I'm now switching to every 7 weeks instead of every 8 weeks since the Tysabri seems to start wearing off around week 6. Hopefully I can keep the UTIs in check. Hope everyone is doing well!

I'll have infusion #45 next week. I had to postpone it for a week because my grandchildren are coming to visit I just spent a week in California taking care of them because my daughter and sil both had to go into the office to work M-F. Now they're need to come to Nevada and I get to babysit again

Infusion #44 went ok. I'm having my infusions at my neuro's office now. Originally I had some concerns about the size of the room and how crowded it was, how often the infusion room was being cleaned and whether or not the infusion nurse was ill....she told me she wasn;t feeling well.....and the nurse's lack of confidentiality. However, my neuro has addressed all of the problems and I'm hoping things will continue to improve. She had the infusion nurse declutter the room so it was possible to recline in the recliners...I need to or I get dizzy......and it's now possible to get up and use a restroom if necessary. Since the room has been decluttered the cleaning staff can now dust and mop daily. It does help to be able to breathe...LOL As for the nurse's lack of confidentiality I'm hoping that having the neuro talk to her will help.

After my next infusion I will only have 8-9 infusions before I must switch to medicare. I don't know if I will be able to find a supplemental insurance which will pay for Ty. Medicare only pays 80%. The cost of Ty is going up. If I can't find a supplemental insurance to help with the other 20% I may need to stop my infusions As it is we are paying $1000 a month to have medical insurance and since my husband is on medicare only $150 of that
$1000 is for him.

Ok...I'll worry about that in a few months. Right now I'm going to continue with my infusions and enjoy the benefit I receive from them.

I hope everyone is doing well. Linda I don't know if you are in AZ or in CO now. Wherever you are I hope you are able to get your infusions.

hugs to all,
Shayna

RW I'm so sorry about your insurance!!!!!!!!!! Mine will no longer allow me to have infusions at my "old" infusion center. And, I was so happy there...LOL

hugs,
Shayna