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Old 05-29-2007, 08:18 PM
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Join Date: May 2007
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Quote:
Originally Posted by smiles1678 View Post
I live in the Upper Peninsula of Michigan and I very much want to go on Tysabri. My Neuro will not administer Tysabri because of the necessary protocols and the expense of implementing training for her staff. The liability issues are also contributing to her Neuro Group's decision to not prescribe Tysabri.

She referred me to another Neuro to have this medication. I had an appointment with the University of Michigan's MS clinic for April 20th, but an emergency family problem arose and I was forced to cancel it. Now, I am on the waiting list with an appointment set up for Jan 2008! I don't think I can wait that long. I have been on Avonex, Betaseron, and Copaxone already. Currently, I am on Rebif. None of the meds have slowed down my MS exacerbations.

Two years ago, before Tysabri was pulled from the market, I had one infusion of Tysabri. It was wonderful. I had a remarkable response to it and for once I felt like I was making some good progress against MS. I was able to finally get out of bed in the morning without my usual stiffness and wobbling. Then, Tysabri was pulled. I've been waiting patiently ever since to have it available for us again.

Does anyone know of a Neuro in the Upper/ Northern Michigan or Northern Wisconsin area who is following the Touch protocol for Tysabri?

Thanks,
Bek
Have you called MSActiveSource for information? They should be giving you information about TOUCH protocol certified doctors in your area.
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Cheryl
Dx: MS 2001 CRPS 2009




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