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30 years w/MS

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    #1

    30 years w/MS

    Hi, I’m Betz, 63, I live north of SF with my husband & our 3 cats. I was diagnosed when I was 33 with relapsing remitting MS. I take Detrol LA for years, Ampyra for a few years, and just started Provigil in March. I am happy with a new neurologist that I started seeing in March. However, she would like me to consider taking Copaxone daily injections, or the newest drug oral drug Tecfidera. I would be interested in hearing your experiences. The last 3 years, my mind has become extremely forgetful, and my balance is worse. I am using one or two canes daily, or my rollator walker that converts into a wheelchair. My meds are Detrol LA 2006, Ampyra several years, baclofen as needed, and just started Provigil. About 3 years ago I took Prednisone, where I was sleepless for the first 3 days.
    Thanks for listening, more than you want to know,
    Betz
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    #2
    Hi Betz

    Welcome!! wow..you're the 2nd newcomer I've seen dx for 30 years.
    I've done very well on Betaseron. I did take Prednisone when that was the only med available. I vote you try Copaxone and hopefully you'll have good results. Take care
    Susan......... Beta Babe since 1994....I did improve "What you see depends on where you're standing" from American Prayer by Dave Stewart

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      #3
      Don't be foolish. I am glad you posted your info. i am amazed that you have been dealing with this MonSter for 33 years. I'll bet you have seen the disease and treatments change in the medical worlds definitions a whole lot.
      Keep posting about anything and everything. Good luck

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        #4
        Hey Betz

        So glad you are with us. I was on Baclofen for maybe a week but it made me weak, wacky and wall-walking. I switched to Tizanidine which seems to work quite well actually. The best thing I ever did was get off of Copaxone, went to Rebif and now Tecfidera is on its way and I am off of Rebif until my Tecfidera arrives...1 or 2 weeks.

        What I learned is that your med is only one tool. Find what works best for you, if you don't feel well move and move fast to another.

        There is soo much information here and so many amazing people with so much information. For me it was finding the right questions to ask.

        All the best to you!
        I left in love, in laughter, and in truth, and wherever truth, love and laughter abide, I am there in spirit.

        Bill Hicks

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          #5
          Hi, I'm new here as well. I was diagnosed 24 yrs ago. I've recently moved into SPMS. I have not been on any DMDs for nearly 10yrs. I tried Ampyra last year for a while and had no improvement in walking. My legs don't work too well anymore but doing ok ...
          Karen

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            #6
            Hi and welcome,
            Everyone is different but I have been on Copaxone for 8 years now and am doing rather well so far, knock wood.

            Unfortunately I don't know if it is the medication, my course of MS or a combination but I'm not taking any chances and will take Copaxone until I start a serious decline or something really appealing hits the market.

            Wish you luck with whatever you decide, Jules
            He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
            Anonymous

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              #7
              You've been through a lot! After 30 years it sounds like your into secondary progressive. At this point it sounds like maybe Copaxone will be too little too late. I think if you want to get the most bang for your buck Tecfidera might be a better choice. It has a better record for slowing progression. You can get information about it online.

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                #8
                Thank you for everyone who replied. I haven't figured out the boards or tried chat. And there's alot of alphabet soup with various ABC's that mean nothing to me. Can anyone direct me to the codes?
                Betz

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                  #9
                  Thank you

                  I want to say thanks to everyone who read my message and especially to those of you who found the time to reply. Leaning toward Tecfidera.
                  Betz

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