Tomorrow is my Tysabri infusion. I always look forward to it because it gives
me some "me time". Sometimes there are others who are also getting Tysabri so
we talk and laugh. I'm never sure who will be there because sometimes people have
to cancel due to weather. I only live a few blocks from the hospital so weather is not
really a viable excuse.
I got an email from a friend of a friend who is recently diagnosed with Multiple Sclerosis.
Her doctor believes she has primary progressive and is talking to her about Tysabri.
This just gets me crazy. This neuro should have his license to practice medicine taken away.
The label clearly states it is for relapsing remitting only. What part of that means primary
progressive MS?
I always worry about the patient because Tysabri hasn't been approved for anything but
RRMS. I am also afraid if neuro's keep doing this Tysabri will have more deaths and
risk being pulled from the market again.
It saddens me deeply that a neuro will risk a patient's life when he knows it is not a good
idea. I told my friend how I feel. I know it is not what she wanted to hear but I didn't
feel comfortable telling her I thought it was a good thing to go on Tysabri when her
MS was progressive.
On a more positive note...Anybody making a New Year's Resolution? I'd love to hear from
you. Share your thoughts and inspriations.
And to make it even better the Packers won. Yeah !! And the Jets lost. Yeah !
Ok, so now the NY side of my family all hate me. I was born in NY and I have a special
place in my heart for NY but I really am glad Favre the whiner lost.
Cathy
www.TheMSShoppe.com
Sunday, December 28, 2008
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