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So tired of being 'possible'

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    #31
    You guys aren't alone. Especially after that first decade, I would have done almost anything to know what was wrong. I stared at MRI machines and dared them to show me a brain tumor.

    It took me 14 years to get a diagnosis, which turned out to be wrong on the specifics, but at least in the right ballpark and made clarifying the situation easy after a little more progression.

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      #32
      I don't have a diagnosis, it is impossible to find out. They never found out 41 years ago and when I have taken an MRI today, there is not a sign of anything. The only thing I know is that I got paralyzed from the toes and up and not the other way so it can only be a few thing.

      But I know for sure I have a SCI but I don't know the reason. That I have know all the time. But I would like to know why.
      TH 12, 43 years post

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        #33
        Originally posted by Tokahfang View Post
        It took me 14 years to get a diagnosis, which turned out to be wrong on the specifics, but at least in the right ballpark and made clarifying the situation easy after a little more progression.
        Right, so often it's a question of narrowing things down through observation over time. Getting in the right ballpark is essential, otherwise there's just a jumble of symptoms without a context. I'm glad you did finally got clarity on your situation, 14 years is a long time to wait.
        MS with cervical and thoracic cord lesions

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          #34
          Originally posted by woman from Europe View Post
          I don't have a diagnosis, it is impossible to find out. They never found out 41 years ago and when I have taken an MRI today, there is not a sign of anything. The only thing I know is that I got paralyzed from the toes and up and not the other way so it can only be a few thing.

          But I know for sure I have a SCI but I don't know the reason. That I have know all the time. But I would like to know why.
          Paralysis from the toes-up sounds like Guillain-Barre syndrome, which doesn't show up on MRI - but then, there are so many neurological conditions that are difficult or impossible to pin down, especially after so long a time. The bottom line is loss of function, diagnosis or not, and that's the agonizing thing.
          MS with cervical and thoracic cord lesions

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            #35
            Wow there are a lot of interesting stories here. It helps me feel not so alone. Even though I have dealt with my severe pain for 30 plus years and am only just getting started trying to find out what it is, I feel like I have some nice support here since many of you have been through something similar.
            Just wanted to say thanks!

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              #36
              Originally posted by Bonnette View Post
              Paralysis from the toes-up sounds like Guillain-Barre syndrome, which doesn't show up on MRI - but then, there are so many neurological conditions that are difficult or impossible to pin down, especially after so long a time. The bottom line is loss of function, diagnosis or not, and that's the agonizing thing.
              I am testet for Guillian Barré, it is not that. And I am testet for MS, it is not that and I am only affected from T11/12 and down. And I was walking the first 30 years but then it got worse and after 5 years I could not walk at all anymore. They never found a reason for that either.
              TH 12, 43 years post

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                #37
                Originally posted by woman from Europe View Post
                I am testet for Guillian Barré, it is not that. And I am testet for MS, it is not that and I am only affected from T11/12 and down. And I was walking the first 30 years but then it got worse and after 5 years I could not walk at all anymore. They never found a reason for that either.
                Oh, how frustrating - I know how pale a word that is, compared to what you've been through trying to get a diagnosis.
                MS with cervical and thoracic cord lesions

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                  #38
                  Originally posted by woman from Europe View Post
                  I am testet for Guillian Barré, it is not that. And I am testet for MS, it is not that and I am only affected from T11/12 and down. And I was walking the first 30 years but then it got worse and after 5 years I could not walk at all anymore. They never found a reason for that either.
                  How utterly maddening that must be. I hope they figure it out soon. So at least you can have an answer- something!- that explains it all.

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