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Old 08-08-2015, 08:42 AM #11
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Lynn, I just had blood work done last week so I'll probably know my JCV status in a couple of days.

He was also talking about trying Gilenya. I don't know anyone who has taken that med but I have looked it up and it seems pretty much like all the others.......risks and benefits.
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Old 08-14-2015, 05:00 AM #12
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I've decided to look for another Neurologist. There's been too many instances of him not disclosing all the risks for certain meds (PML to be exact).

I know it's my responsibility to at least do my own research before blindly accepting what I'm told as the truth.....and I have learned that lesson well with the suggestion of MS drugs that carry a significant PML risk (Tysabri and Gilenya).

And the knowledge that the FDA issued a PML warning for Tecfidera and I was on that drug for nearly a year before having a terrible allergic reaction and stopping it. And I am JCV positive and had NO testing before starting the Tec!!

Never again will I accept what I'm being told as the truth before confirming it myself.
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Old 08-14-2015, 02:37 PM #13
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it's a sorry state of affairs but you're right kitty.
we all have to be smart consumers and unfortunately that means in healthcare too.

i hope you find the right dr.
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Old 08-15-2015, 02:31 PM #14
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You're right-we have to be proactive health care consumers!!

Do your research in finding a new doctor as well...hope you can find an MS specialist.
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