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Old 08-31-2010, 11:17 AM #641
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What outstanding news
I, too, am so happy for you!!!
I am considering not being tested... as I only want to hear good news
Linda
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Old 08-31-2010, 11:20 AM #642
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Quote:
Originally Posted by Grammie 2 3 View Post
What outstanding news
I, too, am so happy for you!!!
I am considering not being tested... as I only want to hear good news
Linda
Get the test .... and then cover your ears. More information is always better.
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Old 08-31-2010, 01:02 PM #643
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Yeah for RW!!!! This calls for a party. I hope you are out celebrating!! I'm very happy for you. Yeah!! Yeah!! Yeah!! Yeah!! I could keep going.....
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Old 08-31-2010, 09:40 PM #644
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RW, I'm so happy for you!!!

...but, I haven't been following this Ty thread and I don't know what the JC test is.

But if you're excited, then I'm excited for you, friend! Hope you enjoyed your meet and eat with the Wabbit.
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Old 09-01-2010, 03:36 PM #645
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RW, I'm so happy for you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I hope we all test negative...if we have a chance to be tested. My neuro is still waiting for Biogen to co-operate. I'll be calling my case manager at Biogen this afternoon.

huge hugs to all ,
Shayna



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Originally Posted by Riverwild View Post
Ready?

My phone rang this morning at 8:00 a.m.
I am usually asleep or on my way to bed at that time but today I was right next to the phone so I grabbed it.

It was my doc. He said "I NEVER call patients to give them test results, but I just had to call you and share this. You are my first patient who was tested for the JC virus who had negative results"
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Old 09-02-2010, 12:01 AM #646
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Shayna--let us know what your case worker says and any other tidbits you find out!
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Old 09-02-2010, 12:51 AM #647
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Hooray RW!!
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Old 09-02-2010, 08:17 AM #648
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My neuro is still waiting for Biogen to co-operate.
Same with me. My neuro described it as Biogen dragging their feet. Hopefully in the next few weeks.
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Old 09-02-2010, 08:15 PM #649
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Default 2nd call from Biogen rep

When the rep asked me if I had any questions let me think !!
I asked about jcv test coming back positive. She said 80% of adults have been exposed to the virus-it is dormant and 65% of adolescents. It doesn't mean that 80% will get pml-just that they've been exposed to the virus.

Fifty percent of those that contacted pml had received immunosuppressant drugs prior to Ty.

As of 8/4/10 there are 71,400 people who have had Tysabri (I said 1 or more infusions-she just laughed ...??) world wide 40,800 are in the U.S.

Biogen does have 2 financial aid programs but does not help with infusions.

I complained again that we want info like it was presented till 7/24/08. I told her that next month will be 4 years for me and telling me chances of pml increase with time on Ty means nothing - I need and have the right to have real odds so I have the info to make an informed decision. She agreed, took notes and said she will pass on.

Just wanted to share
Linda
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Old 09-09-2010, 02:48 PM #650
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Well I am currently getting infusion #23 right now. Just waiting for the saline drip to finish. Today was nice--I got put in a room by myself (instead of the usual row of chairs with others). It was quiet and I could kick back and read and nap. Every time I come for an infusion I realize how much I love Tysabri! #24 is scheduled for November and then after that I am not sure what will happen. The clinic is still waiting on approval for the JC virus test. Big medical school = big bureaucracy. With a negative test I would love to stay on the drug. Anyhow, hope everyone is doing well!!
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