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    How is 'permanent' stuff identified?

    • How do we or neuros know?
    • The things that only improve, not disappear?
    • Is nothing ever gone completely?
    • Are they able to trace specific Sx to specific lesions?
    • I've heard the term 'black hole'. Are those permanent lesions not possible to improve/remyelinize?
    • Is remyelinize the correct word? It would be better as remyelinizationtron-3000


    🚀👽
    Sx start May '13 | Dx'd Dec '13 | Tysabri Feb '14 [Neuro's call&saved my life]
    Just because we don't feel flesh, doesn't mean we don't fear death

    #2
    Originally posted by Chowda View Post
    • How do we or neuros know?
    • The things that only improve, not disappear?
    • Is nothing ever gone completely?
    • Are they able to trace specific Sx to specific lesions?
    • I've heard the term 'black hole'. Are those permanent lesions not possible to improve/remyelinize?
    • Is remyelinize the correct word? It would be better as remyelinizationtron-3000


    🚀👽
    I'm no doctor, but can repeat what's been communicated to me by my neuro.

    You won't know it's permanent, until it's permanent. In other words, during a flare you have no means of knowing if something is going to hang on, but if it does hang for longer than 6 months, it's most likely going to be with you, but IMO, even permanent symptoms seem to come and go in intensity.

    Spme symptoms can be traced to certain lesions, but I'd say most cannot. However they can be traced to certain areas of the brain, because different arees are "in charge of different funcions." I have one lesion that they can say is responsible for certain symptoms, but I think that's because in the area of the brain it's located, there are certain functions that are limited to that speciic area.

    As far as black holes here's a very good explanation:
    http://www.msbrainbank.org.au/black-hole-ms1

    And the word is remyelinate and remyelination.

    I'm sure others will chime in who are more informed than I.

    Comment


      #3
      As I understand it a "Blackhole" is a lesion that has died and left a hole. Which means that portion of the brain is dead. That's the way it was explained to me by one of Neuro's. Which by the way I fired so take it for what it's worth.
      Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

      It's hard to beat a person that never gives up.
      Babe Ruth

      Comment


        #4
        A black hole is where a lesion once was. When enough axon damage has been done a lesion becomes a black hole.

        A black hole indicates permanent axon damage. However, the brain has the ability to re-route/re-wire around the black hole.

        I no longer have the article and it may take some time to locate it but if I remember correctly there was evidence that a black hole could remyelinate.

        I once showed a black hole which encompassed 3 small lesions that were close together, that black hole is no longer visible on MRI and has not been for quite a few years.

        Permanent symptoms are those symptoms that never go away and become part of your daily life.

        My person perspective on "permanent" symptoms. Never consider any symptom permanent for a least two or three years.

        I have personally experienced the improvement of a "permanent" symptom after 2 and 3 years with one symptom improving 8 years later.

        I think part of what you are talking about may have to do with the "remission" part of the disease. Correct me if I am wrong

        Remission when related to MS can be complete (no symptoms) or partial (symptoms come and go and/or residual symptoms). The most common for those with MS is partial.

        Unfortunately, MS leaves many of us with symptoms that may range from annoying to disabling and everything in between.
        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

        Comment


          #5
          Originally posted by SNOOPY View Post
          Remission when related to MS can be complete (no symptoms) or partial (symptoms come and go and/or residual symptoms). The most common for those with MS is partial.

          Unfortunately, MS leaves many of us with symptoms that may range from annoying to disabling and everything in between.
          A little off topic, but I want to say thank you to Snoopy for all of this good info and for consistently excellent contributions. This is one of those questions (what is a black hole) that becomes terrifying fast, especially for we newer MSers, but you answered it with levity and useful detail. I always look forward to your posts - thank you

          Comment


            #6
            Hello abeautifullife,

            Originally posted by abeautifullife View Post
            A little off topic, but I want to say thank you to Snoopy for all of this good info and for consistently excellent contributions. This is one of those questions (what is a black hole) that becomes terrifying fast, especially for we newer MSers, but you answered it with levity and useful detail. I always look forward to your posts - thank you
            I am humbled, thank you
            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

            Comment


              #7
              Originally posted by abeautifullife View Post
              I always look forward to your posts - thank you
              Me too! Thanks for commenting so I can say, "I agree 100%".

              Jen
              RRMS 2005, Copaxone since 2007
              "I hope to be the person my dog thinks I am."

              Comment


                #8
                Thanks guys!

                I've had infusion #6 of Ty and that's supposed to be where it's known if it's working. It has! Definitley. But nothing is gone, everything is less.

                Cognitive dysfunction makes me feel I could get a job (desk stuff only) but would be canned pretty fast. My memory has gotten better along with some other cog things. But nothing's gone, I still have bad memory, and I guess cog fog a lot.

                Yes, I saw the neuro that Dx'd me last month and he said he's more tertiary, the neuro at the hospital is like the team manager.

                I can accept physical limitations, but not this. Insecure as ***.

                I know this shouldn't be in my head, but it's lighthearted humour to me: I'm now a gimp. I don't want to offend anyone ...the only reason is the season right???

                I just joined a gym, I am focusing on my health. I don't know what else to do.
                Sx start May '13 | Dx'd Dec '13 | Tysabri Feb '14 [Neuro's call&saved my life]
                Just because we don't feel flesh, doesn't mean we don't fear death

                Comment

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