Happy New Year!

I had #60 on 12/29/11. As usual, no problems, no concerns.

For New Years, I took down my wall of Tysabri. I had 60 vials and boxes stacked up on a shelf. I started keeping them back in 2007 when I started Ty, because we were tracking the vial code numbers. The wall became unruly and refused to stay up, and the tracking stopped long ago, so down they came. Somewhere out there, a transfer station attendant is scratching their head and wondering what the mess of little glass bottles were for!

Hope everyone is doing well!

Congrats RW!!! . Hard to believe you have hit 60!

I'm battling shingles (for latest info see my post in general forum). I'm a little freaked because I have to delay getting my infusion tomorrow morning and it's the 8 week mark. I fear a relapse if I go beyond 8 weeks. But shingles came back after I stopped treatment.

Natalie, so sorry you are battling shingles I have heard Ty stays in your system 3 mths.

All my best wishes-good luck !!
Linda

Infusion went well so did appt-this is what I learned

There is a range for the jcv test. Some are definately at the top and some at the bottom while others more in the middle of + or -, guess that's me since I was + 2010. - 2011. He is considering plus for the purpose of pml odds. At 48 months and being jcv+ the odds are 1/700. There aren't enough people on the med over 48 mths to give me more accurate odds and these odds are worldwide.

I learned a bit about anti-lingo phase I trial. When I said I guess there is no hope for axon regeneration-he said might be. This work being done with myelin could prove to help both. Early stages-I'm all for hoping and praying! there is also the trials/work being done with stem cells!

Linda

Linda,
Interesting about the range. My doc and I have had a lot of discussion about the antibody test and his take is you are either positive or negative, meaning you have or have not been exposed to the JC virus. The old assay was much less specific. The new test only needs a few copies of the DNA for JC antibodies. There's also the chance of contamination from another source in the test, and the +- 2.5% false negative or positive.

Some have the theory that the test may show as positive because of exposure to some other polyoma virus. I don't have a lot on hand as to specifics, but there is some difference of opinion about it. At this point I am just going with remaining vigilant about any changes, regardless of whether I am positive or negative, since we evidently can still catch whatever the little bugger is!

Natalie, bummer about the shingles! Hope it clears up soon for you and you can get back on schedule.

Here's a Q: Has anyone asked about the vaccine for shingles or been offered the vaccine by your doctor?