#36 down. No problems, no concerns as usual.

Had the meeting with my neuro after the infusion. He went to the Key Opinion Leaders Conference last month in FL. He had a lot to say, even had notes. We talked for over an hour. He is no longer pushing drug holiday. His opinion is that there is no protocol, no studies to back up a holiday although there is talk of setting up some sort of scientific study, and that the assay will be out within months and that once you are identified as a non-carrier of JC virus, you'll stilll have to be tested every 6 months since we don't know when we are exposed, who becomes a carrier once they are exposed, etc, etc, etc. Regardless, it was a relief for me since I didn't want a holiday.

So I wait for the test/assay to come out, get on the trial if one is required to test the assay and we shall see where it goes from there!
Life is good!

You can't blame it on me. All of us post articles for each other (those people TAKING Tysabri or considering it). It's very easy for you to copy the link to the Lancet article, repost it in the general MS forum, and start your discussion there.

Thanks RW!! And congrats on #36 I would be curious to know if you learned anything more about the assay. Is it still unclear whether this will be available to all people on Tysabri OR only people who sign up for the clinical trial? My neuro isn't keen on drug holidays either because of the danger of developing antibodies to Tysabri.

According to the notes he gave me, the assay is pretty specific and can pick up as few as 25 copies? of the DNA of JCV in a sample. He wasn't clear on who would be tested but is going to find out more info, but he believed that it was mentioned that it would be trialed and that it had been used on the blood samples from people who were in one or another of the trials (STRATA or TYGRIS) who developed PML and that in every case, they had tested positive for JC (unfortunately, it was after PML). I told him if it did require a trial, I wanted in on it.

He was much more positive this time around. I think being able to talk to others with more people on long term therapy with Tysabri made him a little more comfortable in waiting for the assay.

Running on battery here, back later.

Hey FinLady, wishing you my best !

I am a grateful Ty user and have been for almost 43 infusions. I didn't like where I was headed - ms sx. Offered Ty, made my most informed decision and went with it. It has been good for me-MRIs stable even a bit better, no progression Thank G-d and some sx have gotten better (fatigue, eye and balance) my stamina has increased.

For me Tysabri has been a blessing

CONGRATS RW!!!

Linda

Could it be? Did I actually say something intelligent at work today?!?! It has been a long time since I have felt that I've had something to say that was worth listening to ....could it really be that I am having feelings of 'cognition'??? I'm not quite sure if I even remember what that feels like!? My 2nd Ty infusion was on Feb 12th - could it be making a difference already??

Amy, thanks for what sounds like good news. I had my first infusion on Feb 18 and felt so odd for the first week, now I feel better. My walking had improved so much after my Dec flare, then then the symptoms suddenly increased the week prior to infusion.

My energy is better now, walking and balance are both a litle better. Maybe this will actually work!

Susan

I got a call today from an "information service" company. They asked if I would be willing to be interviewed by local media outlets and give a patient's perspective on Tysabri. She asked some questions about my experience and my views and told me she would send an email following up to make sure she had my facts and story straight.

Maybe I'll be in the local Mulch Pile!

Just want to check in with my Tysabri buddies to let you all know I'm doing great so far on Copaxone. The price has gone way up, over $2,800 per month but it's working well for me (knock on wood.)

I started a new job and I have to stand all day and sell, and yes, you read that right. I have new insurance that's very good and I save over $500 a month with that.

Wish me continued luck with the Copaxone and as usual, I'm cheering for you all and keeping you all in my prayers for continued good luck with Tysabri.

Three infusions and they are already pulling the plug. Well, not all of the way. The latest MRI shows some bad stuff (5 new lesions, 2 active in my T-Spine). The C-Spine and Brain MRIs have been postponed again because of insurance and the neuro agreed we need to see whats going on elsewhere before we do another infusion. AND we await the results of the bone density as she does not want me on Ty if I have to go in for surgery.

So, no Ty for me next week. Good luck guys!