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    Just a tad bit panicked..

    Well I have been on the message boards for a while, researching information.. I have never posted 'cuz, well I haven't had much input. I am newly dx, as of March.. was put on Copaxone, had the typical injection site reactions.. no big deal.. started a Paleo Auto Immune protocal diet, just figured it couldn't hurt.. lost 34 lbs (GREAT, right) went in for my 6 month MRI, just got the phone call that I have new activity and the Dr. wants me to come in to discuss changing my medication. so WHAT does that mean? Does that mean she is concerned about my MS being more progressive? Is it typical for a Dr. to want to change meds this soon?? I have been looking for answers to calm my nerves, but I am at work, stressed and wish I could make it in to see her today instead of waiting til next week.. but she doesn't have any openings.

    I know I can't change the results of the MRI, nor will any answers heal the MS, I just don't know what I should feel. Any advice? Input? thoughts?

    ~Scared and alone at work...

    #2
    Hi sengelhardt -
    I'm so sorry you had to get that news at work. I don't have any answers except try not to think of all the horrible things this could mean. My doctor switched my meds for something simple - the interferon could have had the slightest problem with my bipolar disorder - it's just a small chance with interferons so we switched.

    Maybe they think a different kind of DMD will be better, it's not uncommon for there to be slight changes in your MRIs. I have had a few changes in mine while on Betaseron and will find out if anything has changed again while on the Gilenya.

    Please don't be stressed until you actually talk to your doc. There a zillion different reasons to change DMDs, don't think the worst. And the office/docs really don't like to discuss things over the phone and if they thought it was really important they would have gotten you in ASAP, they obviously do not feel it's a health risk.

    Don't panic! I know it's scary, I've had those calls too.

    Great job on the diet! I wish I had your strenth to keep on something like that, you are diligent. Another reason to not be worried, you are taking very good care of yourself and changes happen in MRIs.

    Post back when you know what happens, I'll be sending good thoughts your way!!!
    This music is the glue of the world Mark. It's what holds it all together. Without this, life would be meaningless

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      #3
      sengelhardt,

      Take a deep breath I am newly diagnosed as well...so I am no pro at this, but I would take what she said as to mean maybe Copaxone may not be working for you, in her opinion, due to the new activity she see's in your MRI and that she wants to suggest trying another CRAB or maybe even Gilenya, etc.

      I think it is pretty common to have to try a couple different CRABs/meds (heck, maybe even all of them at some point for some folks), so try not to worry about anything until you have seen your doc.

      Try not to worry until you have seen your doc (I know it is super hard not to worry ). Like Nette said, if it was an emergency they would get you in right away.
      dxd RRMS 7/2011 - Rebif 8/2011 - Tecfidera 7/2013

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        #4
        It is hard enough to make the decision about which medication to try. Then to get results that indicate it isn't working the best is discouraging. The fact is that not all of the medications work for everyone. I don't think it is uncommon to switch. I don't think it means you are progressive either.

        After 18 months on Avonex I developed a new lesion with a significant flare. We did discuss changing medication, or adding on other treatment. Because that lesion was not enhanced, we decided to wait and see. I stayed on my Avonex.

        Sometimes it does take time for the medication to ramp up to it's full effect. After you review your MRI results with the doc, it may become more clear if you should make a change.

        I have a friend who added Rebif to her Copaxone for a year or so. She then dropped one of them. She also had first chosen Beta and did not do well on that at all. Another added monthly pulse steroids to calm things down.

        My point is that one medication can be a better match than another. Ultimately it will be your decision to change now or wait and see if more time changes things.

        Hope this helps!

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          #5
          Thanks for all the feedback, I am still processing all this. I had such high hopes for the MRI, and I guess they were just shattered. I am just SO freakin' scared of what to expect with all this.

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            #6
            It's probably nothing to worry about. Neurologists have a few more choices up their collective sleeve these days, thanks (maybe) to the arrival of to Gilenya and Tysabri.
            Some doctors like Copaxone, some like the Interferons, some are keen to try the new stuff, especially, I think, with people who are newly diagnosed.
            Breath deeply. Neuros aren't known for their tact.
            ("Tad" is my just about my favourite word, by the way.)

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              #7
              And remember, a few new lesions are not an indication that the medication is not working since they don't stop the Disease, just slow down its progression. RRMS is still a Progressive Disease, just you usually return to your Baseline or near it after an Exacerbation.
              Bill
              Scuba, true meaning of Life! USS Wilkes Barre 91, USS Monitor 96, 97, 99 .. Andrea Doria 96, 98 .. San Francisco Maru 09

              Comment


                #8
                Try not to stress out, that isn't going to help anything.
                Counting on my fingers, you're at your 6 month point of treatment.
                That's still within the window of where your med might not be totally doing its thing.
                I think your Dr. might just be covering their bases. Its pretty normal to have a check-up at your six month point after you start an MS med. Expect someone to want a blood sample or two and they'll also want to give you the normal physical stuff.
                Its also possible you heard more than was said. It happens to the best of us.
                Its also handy to know that many Neuros have the bedside manner of a boilling tea kettle.
                At my six month check up, my neuro wanted to know how I was dealling with my med. She also wanted to see how I was doing overall. The last thing she asked was if I wanted to stick with my DMD med.
                You have an appt. next week. Take a deep breath and chill.

                Comment


                  #9
                  Originally posted by wkikta View Post
                  And remember, a few new lesions are not an indication that the medication is not working since they don't stop the Disease, just slow down its progression. RRMS is still a Progressive Disease, just you usually return to your Baseline or near it after an Exacerbation.
                  Thanks for that comment, you certainly put that into perspective for me.. I guess I didn't expect 'new' lesions.. but I guess I should, given the nature of MS... still learning, thanks for the advice.

                  Comment


                    #10
                    I haven't read all the replies so this may have already been said? if so i apologize to those that took the time to post it already then i did it again.

                    1. after the mri came on board they found out that people with ms have about 10-20 asymptomatic lesions a year, they don't cause relapses so both the doc and the person did not know they were happening. it is a very positive sign that your doc has checked for these silent lesion to determine if copaxone was the correct med for you.

                    2. the progressive stage is when active lesion stop or don't occur as much. the active lesions on your mri are indication that copaxane is not the correct med for you and that your ms is not in the progressive stage. kind of both positive & negative in the phone call. everything about ms is ambiguous like that.

                    chart showing lesion activity and stages of ms. notice lesion frequency goes down the closer MS gets to progressive.

                    http://www.mult-sclerosis.org/msprognosis.html
                    xxxxxxxxxxx

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                      #11
                      it can all seem so confusing

                      can't it?? i'm diagnosed now for about 7 mos. yet had a gut feeling for quite sometime it was MS.

                      It can still be scary though to get your hopes up to only feel like the balloon got deflated on first med out. neuro's probably just covering his bases like the others said. I've learned they do that.

                      I try to stick with how I feel not what the MRI says. it isnt' easy to do, yet if i feel good than i focus on that. i agree stress isnt' good so deep breaths you can't freak out till you get in there. you'll throw yourself into a relapse lol

                      hang in there, you'll be ok and yea i know it isnt' easy especially being at work getting call. what was he thinking??
                      Jen Dx'd 5/11
                      "Live each day as if it were your last"

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                        #12
                        Originally posted by 0485c10 View Post
                        chart showing lesion activity and stages of ms. notice lesion frequency goes down the closer MS gets to progressive.

                        http://www.mult-sclerosis.org/msprognosis.html
                        Thank you for that link, makes me feel a little better. I REALLY can't wait for my neuro appt Wed... I will do my best to not think about it this weekend... LOL

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                          #13
                          Originally posted by sunshine008 View Post
                          i agree stress isnt' good so deep breaths you can't freak out till you get in there. you'll throw yourself into a relapse lol

                          hang in there, you'll be ok and yea i know it isnt' easy especially being at work getting call. what was he thinking??
                          haha, I have calmed down, but I really can't wait to speak with my neuro next week. I have been researching all the medication options with a fine toothed comb so when I go to see her I have all the info I need to make a decision. Thanks for the kind words!

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