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Every Limbo Boy and Girl

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    Every Limbo Boy and Girl

    Hello all. I have been lurking for a bit and this is my first post. Im a 44 yo man, and about 6 months ago, I started having mild tremors in my hands, some memory slips, and a recurrence of facial numbness that I had about 3 years ago and brushed off. This was followed by some significant psychological issues that I am still dealing with and in treatment for.

    Ive seen a few neurologists and MS specialists at academic med centers. Im in NYC so there are a few. One MRI, non contrast, showed a few “tiny foci” that didnt alarm anyone but me. 2nd MRI, with Contrast, showed “normal mri of the brain”. CSF is oligoclonal negative, but my protein levels were slightly elevated.

    I have been driving my family crazy with this and am at the point where I am looking for a third or fourth opinion. My biggest concern is my memory, which is forgetting last names and faces way more than it should be. Its a daily occurrence now. Tremors continue and are now in my lips and tongue, ear popping. I am very scared and alone and just reaching out to find some people with cogent advice, who also dont think I am crazy.

    Ive had follow ups with a memory specialist, a urologist, a GP, an MS doc, psychiatry, etc, and just dont feel like anyone is piecing together the pieces.

    #2
    Originally posted by Xyz789 View Post

    Ive seen a few neurologists and MS specialists at academic med centers. Im in NYC so there are a few. One MRI, non contrast, showed a few “tiny foci” that didnt alarm anyone but me. 2nd MRI, with Contrast, showed “normal mri of the brain”. CSF is oligoclonal negative, but my protein levels were slightly elevated.
    full spinal MRI was also negative.

    Comment


      #3
      Originally posted by Xyz789 View Post
      Ive had follow ups with a memory specialist, a urologist, a GP, an MS doc, psychiatry, etc, and just dont feel like anyone is piecing together the pieces.
      Hi Xyz

      Did any of the doctors give you their thoughts on what could be causing any of your issues?

      Or, put another way, is there a separate cause or explanation given for each of your problems that doesn't necessarily connect them to one disorder such as MS?

      Thanks.

      Take Care
      PPMS for 22 years (dx 1998)
      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

      Comment


        #4
        Koko,

        Thanks for the suggestion. The only thing they keep pointing me to is my anxiety and depression. Ive had a million tests run for alternatives and theyve all come back negative.

        I find it hard to believe that the anxiety is causing fluttering in my ears, and causing my legs to sweat at night, etc. Also, Ive had anxiety and depression my whole life, and this time its very different. Much deeper, and unregulated. It can flip like a switch throughout the day, willy nilly. I think it, too, is being exacerbated by whatever is going on neurologically.

        Comment


          #5
          Thank you for your reply, Xyz.

          Originally posted by Xyz789 View Post
          I find it hard to believe that the anxiety is causing fluttering in my ears, and causing my legs to sweat at night, etc. Also, Ive had anxiety and depression my whole life, and this time its very different. Much deeper, and unregulated. It can flip like a switch throughout the day, willy nilly. I think it, too, is being exacerbated by whatever is going on neurologically.
          I hear what you're saying and it makes sense. Very frustrating.

          While you're waiting for answers, why not find some ways to help reduce your anxiety. There are several practices that are really helpful such as breath work, mindfulness, physical movements, etc.

          Hang in there, Xyz. Hope you continue to share your journey with us.

          Take Care
          PPMS for 22 years (dx 1998)
          ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

          Comment


            #6
            Thanks. Will do.

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