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Newly diagnosed with Relapsing/Remitting MS

First, I would like to introduce myself. My name is Michele. I am 45 years old, and was officially diagnosed with Relapsing/Remittng MS on September 30, 2015. I have been working since I was 14 years old. I am still working and want to continue to do so. I am JCV positive. In the midst of starting Gilenya, but am skeptical because of the JC Virus that I tested positive for. I know there gave only been 3 cases of PML reported thus far with patients taking Gilenya, but I was just wondering if Montel Williams who has had RRMS since he was 20 years old, but they discovered it when he was 40, and now he is 58, and still uses the treatment method by taking shots everyday, that why would that not be successful for me. Anyone out there taking Gilenya, or shots to slow up the progression of their MS? Looking for opinions and experiences. Thank you all in advance for any suggestions. Also, wishing all of you a Healthier, Peaceful, Loving & Prosperous New Year! Hey, maybe there will be a miracle cure for MS in 2016. Thinking positive…

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Comments

  • Azjackie
    4 years ago

    Michele,

    Thank for the retirement comment. One of those days I needed that.

  • Azjackie
    4 years ago

    Wow, this sounds like my story. I am 45, have worked since I was 13. I did end my 20 year career. I try to joke I retired. I was diagnosed 1/2008. I was first placed on Their self injection 3 times/week for 1 year. An MRI indicated worsening. Next placed on Tysabri infusions 1 time/month for 1 year. A blood test indicated positive for JCV immediately pulled off. An MRI indicated worsening. Now on Gilenya for 3 years. New neurologist due to insurance issues and he added Ampyra, my balance is “wonky” and I walk poorly. Hey but 3 MRIs indicate no changes.

    In a nutshell each of us victims have different symptoms and different challenges. With each prescription I had a fear of side effects after researching them and Dr’s are in practice not expert of this disease because of the differences. I can only suggest make educated decisions based on the info your neurologist recommends.

    Good luck I wish you well.

  • Michele author
    4 years ago

    Hi Azjackie. Thank you so much for your response and advice. Hey Azjackie, in my book, you did retire. Working since you were 13 years old is terrific!

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