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Thread: New member, MS 20+ years

  1. #1
    New Community Member
    Join Date
    Aug 2016
    Bay Area, CA

    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.

  2. The following user says "thanks"

  3. #2


    Welcome to BrainTalk, epicenegreen!

    We have a VERY active MS forum and you can go directly there through this link:

    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!

    Moderator #7

    It's really easy to put someone on ignore and it's strongly recommended that you do so with people whose posts you don't like.

    Step 1 - log in
    Step 2 - click on the "settings" link
    Step 3 - click on the "edit ignore list" link on the left side of the screen
    Step 4 - type (or paste if you copied and pasted it) the username of the person you want to ignore
    Step 5 - click the "ok" button on the right of the screen

    One important note though, this won't hide quoted posts. It's an oversight on the developers part and it's not an easy thing to "fix." So if someone quotes someone you have ignored, you'll see the quote.

    Alternatively when you click on a person's name and view their profile page, underneath their avatar, there is a option that says, "Ignore this person". Click that link and then click the yes button.

  4. The following user says "thanks"

  5. #3
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Blog Entries


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


    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,

    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  7. #4
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Blog Entries


    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 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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