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Old 04-11-2011, 11:28 AM #1
daisy.girl daisy.girl is offline
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I saw my neuro, and he thought that the fast heart rate, internal tremor that I was feeling was actually an increase in my heart rate, which is a reaction to the Tysabri. He also thought that I should try one more with the rate of infusion slowed down. He really wasn't too concerned that my JC Virus titer was positive, he said that I could still have up to 24 infusions with a positive titer.

I told him I would think about whether or not I wanted to try anothe Tysabri infusion or not. I am having company all of next week, so I am not going to do anything until after that.

Please pray that I make the right decision for me.
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Old 04-11-2011, 11:44 AM #2
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Quote:
Originally Posted by daisy.girl View Post
he said that I could still have up to 24 infusions with a positive titer.
I'd be wondering myself where he pulled this number of '24' from (unless he disclosed the source to you).
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Old 04-14-2011, 11:35 AM #3
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The '24' is probably his Guesstimate of the risk. The test is actually not for the Virus, it is for Antibodies to the Virus, which may indicate a possible higher risk. You just have to decide if the benefits out way the risk.

If it gives you a much higher Quality of Life you may be willing to assume a higher risk. It can be a very difficult decision.
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Old 04-17-2011, 09:10 PM #4
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I was told by my neurologist that Tysabri was the ONLY THING left for us to try; exhausted all the A, B, C & R drugs can no longer take them for one reason or another. I knew he was involved with the trials testing for the JVC virus & I INSISTED on being tested BEFORE I would even consider Tysabri. The results came back last week I TESTED POSITIVE FOR THE JVC VIRUS!

Trouble has a tendency to find me with me having to look for it so NO I WILL NOT TAKE MY CHANCES ON TYSABRI KNOWING I HAVE THE VIRUS & IF I WAS TAKING IT & FOUND OUT AFTERWARD I WOULD STOP IMMEDIATELY!
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