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TM to CDMS

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    TM to CDMS

    I've been a big lurker on these boards for a year. I was dx'ed with TM(partial) at c1/2 a yr ago with no brain lesions and 5 Obands. I recently went back for my follow up MRI's and I have brain lesions now..one enhancing. Im 40 yrs old which I feel like is a bit old to be newly dx'ed. The main reason I am posting now is bc I feel like there aren't many people like me on this forum....believe me, I've been looking. Everyone tells you..no brain lesions on initial MRI ...no MS. I suppose we all don't know how things will play out. There are many here who have come for support and to be heard. Limbo is a place that is difficult for all that have been there. This is the first time I am starting my own thread bc I don't want someone in a similar situation to feel dismissed. MS does not follow a predictive path. We are all individually unique. Listen to your body. Follow your path. Be supportive. Listen. Sympathize.

    #2
    You make a great point, but you also need to realize you had part of the MS criteria filled already with the 5 o-bands in your CSF the first year. Like SNOOPY. Although not specific for MS, when seen in over 5 (used to be accepted over 3), it is very likely for MS. Now that you have 1 enhancing lesion, you can be diagnosed as you have two on the list of the Revised McDonald Criteria.

    I agree people shouldn't give up, but we try not to encourage them to push so hard if there are 10,000 symptoms that are unaccounted for by a lesion when there should be if there is weakness or things of that nature.

    Take care and welcome to the club Lisa
    Disabled RN with MS for 14 years
    SPMS EDSS 7.5 Wheelchair (but a racing one)
    Tysabri

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      #3
      40 isn't too old

      Hi, I am sorry you are here with us, but you are in a great place for support. There are many of us here who were diagnosed over 40. I am 43 and was diagnosed with RRMS in April of this year. I have 2 brain lesions and one thoracic spine lesion. I was lucky that I was diagnosed very quickly. Rest assured, there are many that are diagnosed at or over 40.
      Diagnosed RRMS 4/7/15, symptoms for 8 months prior. Copaxone 4/27/15

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        #4
        Thanks Boymom123 and 22cyclist for welcoming me and your replies. I of course doubted a dx of MS was going to be my endpoint due to my age and also bc of my initial clean brain MRI. The MS specialists I saw were unfazed by the LP results so I'm surprised to hear that it pulls any weight in a dx.

        I feel like it is all very heavily weighted on MRIs. I had one cervical cord lesion and they wanted more. Early treatment was not suggested by either MS center so I assume they considered me low risk.

        There are many studies that show that cord lesions without brain lesions very rarely go on to CDMS. I have not seen other stories where this has been the case, although I'm sure there must be some. Perhaps it's rare. If I had gone back for this last MRI and my brain was clean, I would not have ever gone back for any more MRIs or neuro appointments. I was tired of thinking and worrying about it. I wanted to move on with my life. That could've been a bad move. I think it's our responsibility to listen to our gut and be proactive...even though I might not have done the same.

        Those who got a quick dx are essentially lucky...not lucky bc you have MS, but lucky bc you never had to wonder if you were crazy or overreacting. That was really all I was saying. I'm sad that I have MS, but I'm relieved that I am empowered with the knowledge to move forward.

        ** 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. **

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          #5
          Hi jduke411,

          I am sorry you have received a diagnosis of MS. I always hope those in limbo never hear the words "you have Multiple Sclerosis."

          Many years ago MS was known as a "young person's disease" diagnosed between the ages of 20 and 40. This disease no longer has age limits, the very young and those over 50 are being diagnosed.

          My diagnosis (CDMS) was under a different criteria (Poser). I had a positive LP (o-bands), MRI was clear, but based on my symptoms and Neurological evaluation my Neurologist said the disease was affecting the spinal cord. He was correct. My c-spine MRI in, I think, 2005 showed numerous (too many to count) lesions. My brain lesions have stayed low (3).

          To this day the majority of my difficulties are spinal cord based.

          Even without MRI evidence you can still have symptoms that are a result of MS.

          I feel like it is all very heavily weighted on MRIs.
          All you need to do is look at the McDonald Criteria to know that is true.
          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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            #6
            Snoopy,

            I'm curious...did your MRI report actually say that you had numerous or too many lesions to count?...Because I am an MRI tech and I've never seen a report that is so nonspecific/vague in nature. How can they be too numerous to count? That's the radiologist's job...to count them and be specific in appearance and location. It's their job to be precise. I find that odd.

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              #7
              Originally posted by jduke411 View Post
              I'm curious...did your MRI report actually say that you had numerous or too many lesions to count?...Because I am an MRI tech and I've never seen a report that is so nonspecific/vague in nature. How can they be too numerous to count? That's the radiologist's job...to count them and be specific in appearance and location. It's their job to be precise. I find that odd.
              I highly doubt the wording makes any difference.

              From the report:

              The sagittal STIR sequences demonstrate multiple small foci of increased T2 signal.

              Impression: Multiple cord signal abnormalities as described above. Findings are most consistent with patient's clinical history of Multiple Sclerosis. This MRI is dated 2004.
              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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