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So....anyone have thoughts about what my neuro said

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    So....anyone have thoughts about what my neuro said

    I’ve had symptoms for a couple years. All blood work was normal. Even Vit D! Woo hoo! My brain MRI showed 3-4 spots, he said my brain is older than expected for a 38yr old. He said “remember how I said you fit the demographic for MS exactly?” Gee thanks doc. He wants to do a MRI of neck and spine to see if lesions are there too before he “diagnosis’s me with MS.” It’s like he wouldn’t say it. So if my next MRI doesn’t have lesions I’m guessing I’m in early stages of MS?? The symptoms don’t make me feel like it’s early stages. Neuro said I need to have more spots on the brain to call it MS with the neck and spine.
    Thoughts????

    #2
    Originally posted by vortexmama79 View Post
    I’ve had symptoms for a couple years. All blood work was normal. Even Vit D! Woo hoo! My brain MRI showed 3-4 spots, he said my brain is older than expected for a 38yr old. He said “remember how I said you fit the demographic for MS exactly?” Gee thanks doc. He wants to do a MRI of neck and spine to see if lesions are there too before he “diagnosis’s me with MS.” It’s like he wouldn’t say it. So if my next MRI doesn’t have lesions I’m guessing I’m in early stages of MS?? The symptoms don’t make me feel like it’s early stages. Neuro said I need to have more spots on the brain to call it MS with the neck and spine.
    Thoughts????
    Hi vortexmama79

    Here is an explanation of the criteria for diagnosing MS from the National MS Society (easier to understand than if I tried to explain it):

    In order to make a diagnosis of MS, the physician must:

    Find evidence of damage in at least two separate areas of the central nervous system (CNS), which includes the brain, spinal cord and optic nerves AND

    Find evidence that the damage occurred at different points in time AND

    Rule out all other possible diagnoses

    The Revised McDonald Criteria, published In 2017 by the International Panel on the Diagnosis of Multiple Sclerosis, include specific guidelines for using MRI and cerebrospinal fluid analysis to speed the diagnostic process. The MRI can be used to look for a second area of damage in a person who has experienced only one attack (also called a relapse or an exacerbation) of MS-like symptoms — referred to as clinically-isolated syndrome (CIS). The MRI can also be used to confirm that damage has occurred at two different points in time. In some circumstances, the presence of oligoclonal bands in a person's cerebrospinal fluid analysis can be used instead of dissemination in time to confirm the MS diagnosis.


    https://www.nationalmssociety.org/Sy...g-MS#section-1

    Hope this helps. Does it clear things up for you a bit? MS can be somewhat confusing.

    If you have any questions, just ask and we'll be glad to help if we can.

    Take Care
    PPMS for 22 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

    Comment


      #3
      Originally posted by KoKo View Post
      Hi vortexmama79

      Here is an explanation of the criteria for diagnosing MS from the National MS Society (easier to understand than if I tried to explain it):

      In order to make a diagnosis of MS, the physician must:

      Find evidence of damage in at least two separate areas of the central nervous system (CNS), which includes the brain, spinal cord and optic nerves AND

      Find evidence that the damage occurred at different points in time AND

      Rule out all other possible diagnoses

      The Revised McDonald Criteria, published In 2017 by the International Panel on the Diagnosis of Multiple Sclerosis, include specific guidelines for using MRI and cerebrospinal fluid analysis to speed the diagnostic process. The MRI can be used to look for a second area of damage in a person who has experienced only one attack (also called a relapse or an exacerbation) of MS-like symptoms — referred to as clinically-isolated syndrome (CIS). The MRI can also be used to confirm that damage has occurred at two different points in time. In some circumstances, the presence of oligoclonal bands in a person's cerebrospinal fluid analysis can be used instead of dissemination in time to confirm the MS diagnosis.


      https://www.nationalmssociety.org/Sy...g-MS#section-1

      Hope this helps. Does it clear things up for you a bit? MS can be somewhat confusing.

      If you have any questions, just ask and we'll be glad to help if we can.

      Take Care
      Koko thankyou for responding. I have read this. So if nothing else is found is there such a thing as early or pre-MS?? I had an MRI 8 years ago and I remember the doc pointing out a small spot I had then. But trying to get those records has not been easy. That MRI was a workup for something else and they saw it. But that mentioned early MS then. I don’t know. The waiting stinks

      Comment


        #4
        Originally posted by vortexmama79 View Post
        My brain MRI showed 3-4 spots, he said my brain is older than expected for a 38yr old].
        MRI spots aren't always MS lesions, and can be caused by other things.

        Originally posted by vortexmama79 View Post
        He wants to do a MRI of neck and spine to see if lesions are there too before he “diagnosis’s me with MS.”
        It appears that your Neuro is following the proper protocol for diagnosing MS.

        Are you going to have the MRI?

        Also, wondering how your clinical neurological exam went ~ reflexes, balance, eyes, nerve sensation, coordination and strength, Lhermittes sign, etc?

        Waiting for answers most certainly can be difficult and frustrating.

        Take Care
        PPMS for 22 years (dx 1998)
        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

        Comment


          #5
          Originally posted by KoKo View Post
          MRI spots aren't always MS lesions, and can be caused by other things.



          It appears that your Neuro is following the proper protocol for diagnosing MS.

          Are you going to have the MRI?

          Also, wondering how your clinical neurological exam went ~ reflexes, balance, eyes, nerve sensation, coordination and strength, Lhermittes sign, etc?

          Waiting for answers most certainly can be difficult and frustrating.

          Take Care
          I figure he is just hard. Yes, I am waiting for insurance to approve it so I can schedule the next MRI. Took a couple weeks last time. He said my neuro exam was fine, not super in depth but I trust him.

          Comment


            #6
            Originally posted by vortexmama79 View Post
            So if nothing else is found is there such a thing as early or pre-MS??
            You may be thinking of CIS or RIS?

            Prior to an MS diagnosis, individuals with “possible MS” may often fall under the parameters of one of two syndromes. The first is clinically isolated syndrome (CIS), where someone may have experienced symptoms of MS for the first time, and an MRI may show evidence of MS, but a diagnosis cannot be confirmed at that time. Disease-modifying therapies are often used to treat CIS in an effort to delay or prevent the eventual diagnosis of MS.

            The second syndrome is radiologically isolated syndrome (RIS), which is the term used when someone has an MRI performed for an unrelated reason, and shows evidence of MS on the MRI scan, but does not have any signs of MS symptoms. As with CIS, more evidence will be needed in the future to determine if someone with RIS may be diagnosed with MS.


            https://mymsaa.org/publications/about-ms/types/

            Take Care
            PPMS for 22 years (dx 1998)
            ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

            Comment


              #7
              Originally posted by KoKo View Post
              You may be thinking of CIS or RIS?

              Prior to an MS diagnosis, individuals with “possible MS” may often fall under the parameters of one of two syndromes. The first is clinically isolated syndrome (CIS), where someone may have experienced symptoms of MS for the first time, and an MRI may show evidence of MS, but a diagnosis cannot be confirmed at that time. Disease-modifying therapies are often used to treat CIS in an effort to delay or prevent the eventual diagnosis of MS.

              The second syndrome is radiologically isolated syndrome (RIS), which is the term used when someone has an MRI performed for an unrelated reason, and shows evidence of MS on the MRI scan, but does not have any signs of MS symptoms. As with CIS, more evidence will be needed in the future to determine if someone with RIS may be diagnosed with MS.


              https://mymsaa.org/publications/about-ms/types/

              Take Care
              Thank you. It was probably RIS 8 years ago.

              Comment


                #8
                Originally posted by vortexmama79 View Post
                Thank you. It was probably RIS 8 years ago.
                From how you have described your history, it looks like that to me too.

                Take Care
                PPMS for 22 years (dx 1998)
                ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                Comment

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