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    Prescribed copaxone with no diagnosis?

    I was recently prescribed copaxone, but have no ms diagnosis. I had some pain and numbness in my neck and shoulder, so my doctor requested some tests to see what was going on. After having an MRI and spinal tap the doctor said my MRI was completely normal and my spinal tap fluid showed I had a marker for ms.

    He stressed multiple times that I do not have ms, I just have a marker for it. He did recommend I go ahead and start taking copaxone because people with this marker have an 80% chance of developing ms in 5-10 years. He said there have been some studies showing early intervention with the medication decrease the likelihood it develops into ms or push back the timeline some.

    Has as anyone ever heard of someone without ms taking copaxone? Any suggestions or thoughts for me? I am trying to decide what to do.

    #2
    Originally posted by jillepskie View Post
    I was recently prescribed copaxone, but have no ms diagnosis. I had some pain and numbness in my neck and shoulder, so my doctor requested some tests to see what was going on. After having an MRI and spinal tap the doctor said my MRI was completely normal and my spinal tap fluid showed I had a marker for ms.

    He stressed multiple times that I do not have ms, I just have a marker for it. He did recommend I go ahead and start taking copaxone because people with this marker have an 80% chance of developing ms in 5-10 years. He said there have been some studies showing early intervention with the medication decrease the likelihood it develops into ms or push back the timeline some.

    Has as anyone ever heard of someone without ms taking copaxone? Any suggestions or thoughts for me? I am trying to decide what to do.
    Hi jillepskie

    I wonder if what you have is called CIS?

    See what you think:

    http://www.nationalmssociety.org/Wha...Syndrome-(CIS)

    That's the only thing that comes to mind for me, in which a DMT is prescribed, without the person actually having been diagnosed with MS.

    Take Care
    PPMS for 26 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      Hi jillepskie and welcome!

      I've never heard of anyone being prescribed Copaxone without a diagnose or MS or probable MS before - it is possible however? I am wondering if the doctor who is prescribing this is a MS specialist? Seeing one might be the next step to take before beginning a DMT regime.

      While it's true that recent studies of early intervention decreases the course of the disease progression, but for me, I'd want more information from a MS specialist.

      Sorry I can't be of more help and hope others here can shed more light on this. Ultimately, you need to decide for yourself.

      Best wishes and good luck!
      1st sx '89 Dx '99 w/RRMS - SP since 2010
      Administrator Message Boards/Moderator

      Comment


        #4
        Hi KoKo and thank you for your reply. I am not sure if that is it or not. The brain MRI was completely clear, but they did see some inflammation in my spinal cord which is why he ordered the spinal tap. He definitely never mentioned the term CIS.

        Comment


          #5
          Hi Seasha and thank you for your reply. The doctor I saw is an MS Specialist. I had all these appointments back in June, but have been hesitant to begin anything. It just seems like a drastic step when I have no diagnosis. I definitely want to take precautions if I need to, but there is a chance it will not develop into anything.

          Comment


            #6
            Originally posted by jillepskie View Post
            Hi KoKo and thank you for your reply. I am not sure if that is it or not. The brain MRI was completely clear, but they did see some inflammation in my spinal cord which is why he ordered the spinal tap. He definitely never mentioned the term CIS.
            jillepskie

            I think that for CIS, the inflammation can be either on the brain or spinal cord (central nervous system).

            This is from the National MS Society article:

            CIS refers to a first episode of neurologic symptoms that lasts at least 24 hours and is caused by inflammation or demyelination (loss of the myelin that covers the nerve cells) in the central nervous system (CNS).

            Take Care
            PPMS for 26 years (dx 1998)
            ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

            Comment


              #7
              Welcome!

              As others have said, the only time I have heard of it is when CIS is diagnosed. For your insurer to cover it, I would think there has to be some diagnosis code.

              Don't be afraid to call the neuro and ask some questions. I know CIS diagnosissometimes follows bouts of optic neuritis, but don't think the odds of MS are as high as 80%. But it could be that with MRI spinal inflammation and positive spinal tap, they are that high. Since your neuro is an MS specialist, I would try to understand where the stats come from so you can make an informed decision.

              Good luck. Let us know how you make out.
              Kathy
              DX 01/06, currently on Tysabri

              Comment


                #8
                Copaxone rx

                hi, I am new to forum but not to MS. I also take copaxone. Have you seen the radiologist's report from your MRI? I have had two different neuros tell me "your MRI is normal", only to get the report and find out quite the opposite; that I had lesions that had 'multiplied and grown larger' w/in a five month period.

                Copaxone is the one MS injection that is not a steroid. That is why I take it, but I also have a dx of MS. My advise: get cc's of your MRI reports (not just pix of your brain) and get a second opinion. I had the spinal tap; only 5% of people w/MS show the marker. I believe if it is there, that is significant. I could be wrong on that. Get your MRI reports.

                Comment


                  #9
                  Originally posted by Acorn1 View Post
                  only 5% of people w/MS show the marker. I believe if it is there, that is significant. I could be wrong on that. Get your MRI reports.
                  Hi Acorn1

                  I believe that you meant to say that only 5% of people w/MS don't show the marker.

                  From the NMSS Website:

                  The CSF of people with MS usually contains:

                  Elevated levels of IgG antibodies, as well as
                  A specific group of proteins called oligoclonal bands.
                  Occasionally there are also certain proteins that are the breakdown products of myelin.

                  These findings indicate an abnormal immune response within the central nervous system, meaning that the body is producing an immune response against itself.

                  An abnormal immune response in CSF is found in a number of other diseases, so the test is not specific for MS;

                  Conversely, some 5-10 percent of patients with MS never show these CSF abnormalities.


                  Which means that 90 - 95% do show the markers.

                  http://www.nationalmssociety.org/Sym...al-Fluid-(CSF)

                  Take Care
                  PPMS for 26 years (dx 1998)
                  ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                  Comment


                    #10
                    Welcome Acorn! Just want to clarify something. I don't believe the other injections taken as a Disease Modifying Treatment or DMT (Rebif, Avonex, Betaseron) are steroids. They are interferons, which are immune system modulators, which could be part of the confusion. Steroids can be used to treat relapses, but do nothing to protect against disease progression.

                    But then again, I am not a pharmacist and may have missed something on interferons. Hopefully someone more knowledgeable will update so future readers have the correct understanding to help with decisions.
                    Kathy
                    DX 01/06, currently on Tysabri

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