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Should I ask for another MRI or is this standard procedure?

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    Should I ask for another MRI or is this standard procedure?

    I'll have my first follow up appointment with the neurologist in June ( a year after diagnosis). I'm on tecfidera and I had a follow up MRI (brain) a couple of months ago. I'll get the results at this appointment in June.

    About a year ago, my first MRI was a cspine MRI which had pretty obvious lesions, I could even see them. Then a month after that, the brain MRI was not so obvious. The neurologist who read the scans said it was clear, but the ms specialist said there was something that was possibly a lesion.

    Anyway, the MS nurse told me that they only do brain MRIs as follow ups, that's standard procedure. I am wondering why, considering it is the cspine that has lesions that I imagine are the ones that should be monitored? Is this something that I should press for when I see the neurologist? It seems like I'll have yearly appointments (at best) so I want to get all my questions answered then!

    #2
    It's a good question. I'd ask.
    "Hope for the best and plan for the worst. That way, all your surprises will be pleasant."
    Verin Mathwin, The Wheel of Time by Robert Jordan

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      #3
      Hi sarabeach:

      There's so much wrong with the way your MS care has gone that I had to check your post to see if you live in Canada. Sure enough you do, which answers so many questions.

      It's standard procedure (apparently in all developed countries) to do follow-up MRIs of the brain, since the brain is the "master controller" and where most people with MS have lesions. It is probably not as standard to not follow up on other areas where troublesome lesions are known to be, particularly in a newly diagnosed person.

      Spinal cord lesions generally tell their status by the symptoms they're causing, so it isn't as important to do spinal MRIs as it is brain MRIs. Lesions in the brain can be "silent," so without symptoms revealing their presence and influence, MRIs are needed to get a view of what's going on there. That's possibly how brain MRIs got to be standard procedure. That might also be why, in Canada (or at least at your MS center), doing only a brain MRI became their standard procedure.

      At least for your first follow-up MRIs, it makes more sense to use an area of notable activity -- your cervical spinal cord -- to get objective documentation of how well Tecfidera has been working for you rather than an area of low activity -- your brain. So it follows that you would want a c-spine MRI as well as a brain MRI.

      What you do about it depends on your personality and your tolerance for confrontation. You have a solid reason for wanting a c-spine MRI, and you can use it as rationale in asking your neurologist for one.

      I probably have a different personality than you do, but in your situation, I would ask the neuro for a c-spine MRI and present that rationale. With some luck, the neuro might just agree and order it. If not, I would continue to question the neuro about the reason for refusal (medical reasons should override financial reasons) and keep asking for the c-spine MRI until the neuro either 1) agrees to it or 2) ends the exam and physically leaves the room. (I'm willing to have the neuro document that I made an "unreasonable" request.)

      Either way, that's the end of the request... unless you're more confrontational than I am and you want to chase the neuro down or otherwise keep pursuing the issue.

      Pushing for something that isn't standard procedure can be tricky. I wish you the best in your pursuit.

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        #4
        I've had MRI's of my c-spine and brain . I have had them done with and without contrast (gadolinium injection) . I don't know if this is considered 'standard' but one would think that all MS neurologists in the civilized world make use of the same protocols. I would press for every test that is applicable. Good luck

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          #5
          I have also had both brain and c-spine as part of follow-up, with heavier lesion load in spine than brain. I know some people get more frequent MRIs of the brain due to medication they may be taking (risk of PML), etc...

          If they refuse, I would ask to understand why spinal MRIs are not part of follow up since the spine is part of the CNS and MS is a disease of the CNS.

          Of course, I would ask in a non-challenging way, more saying it from a stand point that you are concerned about progression and medication effectiveness. I would also ask if at any point further along in diagnosis if c-spine scan is protocol. I don't know if Canadian healthcare has policy on when/frequency/justification for when appropriate.

          Good luck.
          Kathy
          DX 01/06, currently on Tysabri

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            #6
            Thanks for the replies - I'm definitely going to ask the neuro about it. Perhaps it is a lack of communication thing as well. I don't get the feeling that the neurologist and the MS nurses communicate very much. I did ask the question directly to the MS nurse when the MRI was first ordered, so I know it wasn't just an oversight.

            Also, having an MRI in February and making me wait until June to get the results seems like a cruel form of torture! I know that if there was something drastically important that they see on the scan they would have contacted me, but that still doesn't stop me from wondering.

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