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#11 | |||
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Wisest Elder Ever
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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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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here. |
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#12 | |||
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Wisest Elder Ever
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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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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here. |
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"Thanks for this!" says: | Debbie D (08-15-2015), NurseNancy (08-14-2015) |
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#13 | |||
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Grand Magnate
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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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Judy trying to be New Skinny Butt ______________________ You are a child of the universe, no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should. -------------------------------------- "DESIDERATA" by Max Ehrmann |
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"Thanks for this!" says: | Kitty (08-14-2015) |
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#14 | |||
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Elder
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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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Instant Karma's gonna get you-gonna knock you right in the head...John Lennon |
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