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    #1

    it's offical

    I do have MS and if that's not enough I have black holes, permanent damage to my right side.

    I'm in shock... I can't process this. I saw the MS specialist and she really didn't want to go too much into what's on the MRIs. I need to get another one of a different area of the spine.

    She said there's lesions and those may (or may not) heal. I'm freaking out. Having MS is one thing but permanent damage is something else. But what ever the damage is I have use of everything still, it's just aggravating and awkward and a struggle. She said there's not current inflammation. Just lesions and black holes.

    She wants me to start Aubaigo ASAP. She wanted to do Copaxone but I couldn't do shot. I'm not thrilled with this choice. Crazy as it sounds, I wanted Tysabri.
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    #2
    I have black holes, permanent damage to my right side
    Do you mean the right side of your brain?

    Black holes are where a lesion was. Black holes indicate permanent axon damage. However, the brain can re-route around the damage to form new nerve pathways.

    Having MS is one thing but permanent damage is something else.
    No, it's not. When having Multiple Sclerosis black holes can be a very real part of the disease process
    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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      #3
      Hi shel~ here is an article from MedHelp that explains so much about lesions in the brain (called The History Lesson of an MS Lesion) The writing is small. I had a hard time reading all of it, but it's a fairly comprehensive description of what happens in the life of an MS lesion. http://www.medhelp.org/tags/health_p...in-MS?hp_id=23

      Please try not to freak out - OK? You are newly diagnosed and it's always such a difficult time of adjustment. Easy to say, I know, but you are going to be OK. At least you know now.
      Hope you do well on Aubagio!
      1st sx '89 Dx '99 w/RRMS - SP since 2010
      Administrator Message Boards/Moderator

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        #4
        Originally posted by SNOOPY View Post
        Do you mean the right side of your brain?

        Black holes are where a lesion was. Black holes indicate permanent axon damage. However, the brain can re-route around the damage to form new nerve pathways.



        No, it's not. When having Multiple Sclerosis black holes can be a very real part of the disease process
        She said it was on the left side of the brain which means right side of the body.

        She wants me on Aubagio to prevent the lesions becoming black holes.

        I'm just shocked because before this attack I wad fine. I had no physical anything. I was fine. So I don't understand how I can have damage already. I think I had MS for 5 years and attaks were mild. A little tingling here and there and it would go away. So I m shocked.

        I think (hope) new pathways is happening. I can move all my body.I can work. I can walk. I can do stuff. It's just a little harder and a little awkward. The imbalance is what I'm struggling with the most buy my other issues I can compensate. As long I can shower dress put make up on and go to work, I'm be okay. I cut hair so its interesting to say the least.

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          #5
          It would be a little early for you or your Neurologist to assume symptoms are permanent.

          It might be a good idea to be evaluated by a Physical Therapist(PT) and/or Occupational Therapist(OT). They can help you to learn new ways of doing things and ways to exercise to help strength, endurance and mobility. There are exercises that might help you with your balance.

          It can take a year or more to determine if your deficits are permanent and some will see improvements even some years down the way.

          If nothing else, this disease will teach patience
          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

            #6
            Originally posted by shel67 View Post
            I'm just shocked because before this attack I wad fine. I had no physical anything. I was fine. So I don't understand how I can have damage already. I think I had MS for 5 years and attaks were mild. A little tingling here and there and it would go away. So I m shocked.
            shel,

            What your experiencing with MS is very normal, MS is like getting sucker punched (in my opinion). Give yourself time to process the diagnosis and allow yourself to go through the grieving process if needed. Take care
            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
              Thanks for talking to me Snoopy. I have to assume the permanent damage to my right side is not so bad because I still have use. I have so many new, never before experienced, symptoms on both right and left side I have to assume it can't all be permanent.
              And the later newer symptoms that are 2-3 months old can still heal.

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