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Thread: New member, MS 20+ years

  1. #1
    New Community Member
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    Default New member, MS 20+ years

    Hello, I am epicenegreen. I was diagnosed with MS in 1997 after having symptoms since 1996. I took Avonex for less than a year and could not overcome the flu-like symptoms. After another bad vertigo relapse I started Copaxone, which I took until 2015, after a bad relapse in 2014. After steroids for the relapse, I was given Tecfidera, which I took for a year. Due to lymphopenia, I stopped the Tecfidera in May, 2016. I am now looking for a new treatment. My neuro want me to take Rituxan, but was waiting for my lymphocytes to come back up. However, they haven't come back up after two months, so she wants me to start taking the Rituxan anyway, since she thinks it is more dangerous to not be taking anything. So, I am trying to figure out what is next.
    My dad helped me find this community, and I am hoping to find some support. My doctor is leaving the decision to me, since I am being reluctant. It is almost worse to have to decide myself, since I know so little about all of these treatments and how they will affect me. I thought maybe talking with others would give me some guidance.

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  3. #2

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    Welcome to BrainTalk, epicenegreen!

    We have a VERY active MS forum and you can go directly there through this link: http://braintalkcommunities.org/foru...iple-Sclerosis

    You can copy and paste your post above just as you started a new thread here. I am sure some members of the MS forum will see your post here and will welcome you.

    You will find advice and support here!

    #7

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  5. #3
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Smile

    ((((((epicenegreen)))))) !

    TO BRAINTALK!

    I'm so glad that your dad helped you find us!

    As Moderator 7 said, we have an active MS forum, with many knowledgeable, experienced, caring, and fun folks. Please post there and introduce yourself. You're not alone!

    Love & Light,

    Rose
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

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  7. #4
    Distinguished Community Member agate's Avatar
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    Hi epicenegreen,

    Hope you'll connect up with the MS board. Many people there have had MS for a number of years, like yourself.

    According to your Profile, you were on Copaxone for 15 years. That is very impressive! (I lasted only 3 years.)

    Sometimes if you read up on various treatments, you'll find that each one of them might do just about anything to you, and all you can do is try one of them out, and if it doesn't work, think about moving on to another. That seems to be what people have been doing, anyway.

    Looking forward to seeing you on the MS board!
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous



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