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MRIs: Do you know how many lesions you have?

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  • MRIs: Do you know how many lesions you have?

    I actually have no idea how many lesions I have on my brain—and I don't want to know. For good reason. Here's my take on the topic in my latest ActiveMSers blog:
    Dave Bexfield

  • #2
    Yes and No

    No, I don't particularly care how many lesions I have, only if I have significantly more or significantly larger enhanced lesions than in the past.

    Yes, I do care where they are and if they have enlarged. Placement of lesions or plaques, particularly larger ones, may explain some MS symptoms. For example, large lesions in the area of the corpus callosum might explain why some MS patients have language use problems, problems reasoning or even problems with social interaction.

    While knowledge may not exactly be power in the case of MS, it might at least make the MSer aware of instances where he might want to exercise more than normal caution be it a mental exercise, a social experience or some other event. Having said that, I will now shut up.



    • #3
      I stopped counting a long time ago. All I care about now is when they are active and that there are a lot of them and a lot of scarring. Other than that I stopped stressing over it, it was driving me crazy trying to keep track of something that was/is changing so fast. I guess it goes along with coming to terms with the disease, not giving up that it'll "get better" but accepting that I have it.


      • #4
        I see your point...when I asked my Doc how many lesions I had on my spinal cord and he told me 5 I was completely stressed out, sure I'd never walk again and got pretty down about it.

        Even still, I wish I knew how many were in my brain. I asked the neurologist and he was vague. The next time I get an MRI I really do want to know. I am a numbers person, I need the numbers to really get a grasp on it.

        Though it doesn't really matter, it is what it is.


        • #5
          Ah, lesions ...

          I remember a friend saying:
          "It doesn't matter if I have 4 or 5 lesions, or more than last year ... they won't change the does of Copaxone."
          So I asked doc on dx "how many lesions?"
          And he said, "I didn't bother to count."
          enough said
          I did not go looking for second opinion.


          • #6
            Encore reposted in our new blog platform!
            Dave Bexfield


            • #7
              Actually Dave, these days I want to know more than ever. Not only do I want to know if I have significantly more or significantly enhanced lesions and where they are, I also want to know if my brain volume is decreasing at an abnormally high rate and where I stand relative to normal on the brain volume vs age scale. I perceive that information as helping me, in conjunction with my neurologist, to review and revise the current life style and treatment options for my MS. Information is power. And besides, I find that stuff terribly interesting.



              • #8
                lesions I have. Does anyone know how many black holes they have, if any???

                I just recently had my MR I, last one 2 yes ago. I had 15 white plaques and 5 black holes. Do any of you have black holes that you know about???? The last MR I just showed T2 weighted plaques. So I am definitely progressing at a rather rapid speed. Time for me to have Stem cell transplant!!!!!!!!



                • #9
                  While I believe knowledge of exactly where you stand and how your diagnosis is progressing (or not) is important, I find that putting a lot of thought and emphasis on the numbers is not a good frame of mind to be in (for me).

                  My last MRI showed a quarter-sized lesion on my brain and the spinal tap showed a rather high (higher than most on diagnosis) number of whatever it is they're looking for.

                  I tried to focus more on my symptoms or what I can do to keep them in check. Focusing more on keeping my spirits up and finding ways to keep doing what I enjoy everyday, even if I have to do things a little slower or a little differently.

                  So, yes, I am aware of the numbers, their progress and what the results of what's going on in my body can potentially be. I just choose to focus on what I can still do rather than what the progress of this "gift" the Universe has chosen to give me might mean to my future self-sufficiency or abilities.

                  be well and keep active,
                  Last edited by AZgal; 08-04-2013, 12:37 PM.