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Old 10-28-2009, 10:06 PM
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Riverwild Riverwild is offline
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Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
Riverwild Riverwild is offline
Magnate
Riverwild's Avatar
 
Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
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Hi Natalie and congrats on # 17!

It's hard to believe it's been that long for you! It's hard to believe it's coming on #32 for me, sometimes I feel like I just started and that I am like a child in the dark trying to find the door especially when it comes to what is happening with us and Biogen right now.

I may be wrong in saying it was Biogen, but I think it was during a discussion on a possible labeling change and that the FDA may want to include updated information on risk to people who have had long term exposure and what that risk was when it was compared to the actual number of patients with long term exposure and the number of PML cases.

One of the problems that seems to be coming through is that the EU is skewing the rates. I may be way off base here, but since most of the cases so far are from the EU, and Germany in particular, there may be something going on there that we are not seeing here. It's too early to say what it is, because it may be environmental, may be due to something they do regularly and assume is ok that we do not do, may be due to previous treatments, may be that they have more incidence of JC exposure than we do, who knows...but something is going on over there. Hopefully we will get the information we need so we can continue to feel comfortable with our own assessment of our risks as patients and our choice to take this drug.
__________________
I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away?


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I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
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Negative for JC virus antibodies!
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I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
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ewizabeth (10-28-2009), Grammie 2 3 (10-29-2009), Natalie8 (10-28-2009)