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Old 06-13-2008, 09:51 PM
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Join Date: Jan 2008
Location: NE Florida
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15 yr Member
TickledPink TickledPink is offline
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Join Date: Jan 2008
Location: NE Florida
Posts: 19
15 yr Member
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It seems the more people I talk to the more stories I hear. I don't know what the entire truth is any more but I believe that if I am careful and vigilant about paying attention to signals of any type of impending infection from my body that maybe I won't end up in the same boat as those two unfortunate patients.

I know they had a teleconference yesterday between Novartis and all the study centers, so even tho I haven't spoken to my study coordinator since then I am confident that if there were anything I should be alarmed about I would have been told today.

It really hits home that these clinical trials are nothing to take lightly. Even though I've not had anything but minor side effects (UTIs and upper respiratory infections) there is always the potential for something to go wrong that they can't warn us about...after all, we are the guinea pigs who find the stuff out to eventually benefit the masses. If I am benefited in the meantime, then it's icing on the cake.

It's nice to see that others are finally calming down over this devastating news. It's hard for me to remain level headed and objective when I read about others freaking out over the news.

On a more positive note: I have now gone 13 months without one single relapse (averaging 1 every 3 months prior), I have gained all the feeling back in my feet (even that which I had lost 10 years ago), I have loads of energy, I'm no longer depressed, my son asked me to "slow up, will ya?" when we were walking in the grocery store, the only meds I take are my multivitamin, calcium and Fingolimod (or the once a week Avonex, whichever is the *real* thing).

I just basically feel like I've been given a second chance.

I don't have a clue where my cane is, either. To me, that's a good sign.
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~ Jeri
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~ My MS story & clinical trial.
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"Thanks for this!" says:
mom23angels (06-14-2008)