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"A MS Lesion Won't Tell Us You're Having A Relapse"

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    "A MS Lesion Won't Tell Us You're Having A Relapse"

    Quoted my my neuro nurse telling me on the phone this morning. I give up!

    I've read and read about what a relapse is and what is not. And apparently, if I do have a lesion that lights up that means I just have a lesion. "The part of the brain and spinal cord doesn't matter where it is." I'm confused. Doesn't active lesions have a way of disrupting normal nerve signal activity? For example, you have one on your cervical, foot drop, weakness, numbness and so on.

    I'm begging for an MRI anyway. My predictions are that my brain is going to light up like a Christmas tree.

    Symptoms are uncontrollable crying, weakness, foot spasms, eye spasms, pain, insomnia, aphasia, bladder issues.

    The nurse would say those are all part of the disease. Well, why are they hitting me all at once and they've been dormant for over a year and some are new?

    "Why don't you come into the office tomorrow and have doctor look at you?"

    Is it that hard for you to convince your doctor or nurse that you're not crazy and you're sick? And what are your views and knowledge about active lesions correlating with relapses? Thank you!

    #2
    Have you been diagnosed?

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      #3
      Hi Jane,

      You can insist on having a MRI if you so choose, but;

      MRIs will not always correlate to how a patient is doing.

      You can have a stable (nothing new) on MRI and be having a relapse, you can be doing fine and the MRI show more or active lesions and sometimes the MRI and how the patient is doing will match up.

      It is best to treat the patient not the MRI.
      Diagnosed 1984
      “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

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        #4
        Thanks, Snoopy. Makes sense.

        Doc dx'd me with Pseudobulbar affect syndrome today.
        Rx Nuedexta. He said it's going to help. And might also help with my relapse I'm currently having since I can't do steroids. I can feel the difference already.

        Getting a MRI done next Thursday since it's been a year since the last one. We'll just see how things are going up there in the ol' noggin. Last year had some inactive ones on the left frontal lobe.

        Dx 2006

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          #5
          lesion

          Lesion location does not always correlate with symptoms. I have no spinal lesions at all. I have major sx in my legs especially my right.

          For some people, lesion location does correlate with sx.. As soon as someone figures out a clear line of how the MS works, we will have cure, IMO.

          I declined the last MRI. The treatment isn't going to change for me, no matter what the MRI says. I just get way to uncomfortable lying on those hard tables for a hour. For them to say what changes I do or not have. For, me, my treatment is working.

          Glad the doctor gave you some medication to treat you. Not, you MRI.
          God Bless and have a good day, Mary

          Comment


            #6
            In a "perfect world" every flare or symptom would have a corresponding lesion, but then again a "perfect world" wouldn't have lesions to begin with.

            I'm glad your neurologist got you in quickly and decided to treat. At times and when possible, it's worth scheduling a doctor's appointment just to discuss what should you do in an "emergency" situation? They may have after-hours call numbers, or a special protocol to ensure you get quick treatment.

            Hang in there Jane30! I wish you well ...

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              #7
              I agree with Marco, some of my lesions the doctor had pinpointed with specific symptoms, others came and I didn't even know it. Some attacks/flares show "active" lesions and some didn't, although I agree it is somehow more frustrating to worsen with out a lesion change to point to.

              I also read recently that lesion load (total volume combined I think) has much more correlation with relapse remitting ms tied to disability but however it (lesion load) has NO correlation with disability in chronic/progressive ms.

              the article is called "differences between relapsing-remitting and chronic progressive multiple sclerosis as determined with quantitative MR imaging"..there is another article also if anyone is interested let me know..I am too new on here ti post links yet! I thought that was interesting.

              Also in my experience Doctors and Radiologists are not infallible...I guarantee if you randomly picked 2 of each all four would give you a different "count" of your lesions.

              ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

              Comment


                #8
                I did get him to order an MRI since it's been over a year. Getting it done this Thursday. Now the story changes since he has seen me and believes I may be experiencing a mild exacerbation and dx'd me with PBA. If there are any active lesions in the brain, he'll want to treat with solumedrol to shorten the flare. *bangs head on wall.

                I'm still a bit confused. Maybe I'm getting bad information. I've had lesions in the cervical, they say that was the cause of my bladder issues. Lesion in the left frontal lobe, mood.

                Of course I understand now after reading your responses that whatever part of the CNS has lesions, doesn't necessarily effect certain functions and symptoms experienced in the body. Thank you everyone for the info.

                Comment


                  #9
                  Originally posted by Jane30 View Post
                  If there are any active lesions in the brain, he'll want to treat with solumedrol to shorten the flare. *bangs head on wall.
                  .

                  Good grief.

                  Rule of thumb: Treat the patient, not the MRI.

                  If you are having an exacerbation, regardless of what the MRI shows, treatment with steroids can still be given.

                  Note: Not all exacerbations need steroids and it is possible to "remit" without the use of steroids. Treating symptoms is also expectable.

                  If your neuro doesn't want to do either then I would suggest finding a new Neurologist.

                  Best wishes and good luck with the MRI
                  Diagnosed 1984
                  “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

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