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Old 11-09-2008, 09:55 PM
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Riverwild Riverwild is offline
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Join Date: May 2007
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Riverwild Riverwild is offline
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Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
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Quote:
Originally Posted by Natalie8 View Post
Hi RW, thanks for the fantastic information. How often do they do these sorts of things and how do you get invited? Like you, I have never once heard from anyone connected to the drug (case manager etc.) except for the very first time. One thing I did like about Shared Solutions is that they were always checking in with you. Somehow it felt more reassuring and made it easier to stick with the drug. Biogen should definitely move in this direction -- you would think after the PML case(s) they would have sent something out. Of if that was too problematic (for legal reasons?) they should still have a system in place where people call periodically and check in with you. I'm surprised from a financial standpoint they don't do that (providing unsolicited support to keep people on Tysabri).
That was the point I made, Natalie. They should be asking people once in awhile about how they are doing, and whether they have any unanswered questions. It would be in their best interest as a company selling a major MS treatment, and they should start acting like that is what they are doing.

Yabbit was the one who got the information. Go to MSActiveSource.com and click on educational events and choose your state. If there is something scheduled, you will find it there.

For a good laugh go to http://www.msactivesource.com/msavPr...rces-links.xml and look at the bottom of the page. It's STILL there!

They must have worked on the site this weekend because Tysabri IS mentioned now under educational events. There are a few teleconferences listed about Tysabri.
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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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"Thanks for this!" says:
ewizabeth (11-11-2008), Natalie8 (11-11-2008), Victor H (11-10-2008)