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My big appointment finally happened

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    My big appointment finally happened

    And it went amazingly well.

    I've been waiting for a couple of months for an appt with a neuro at a nearby research hospital, after my first neuro basically told me she couldn't do anything else, because my c-spine MRI was only slightly abnormal (no lesions--some stenosis and "not clinically significant" cord compression) and my brain MRI was normal.

    The appointment today could not have been more different! Of course, the neuro's office didn't send the MRI discs. My first neuro never bothered to look at them, so I guess she figured the guy doing the second opinion also wouldn't bother.

    Of course, the first thing he said was he needs to see the MRIs. He also said that bc my particular issues really strongly point to a spinal issue, he's sending me for thoracic and lumbar MRIs. And an EMG.

    He also was not comfortable relying on the initial radiologist's assessment that my c-spine stenosis is "not clinically significant." As much as neck surgery sounds like a pretty awful time, if that's the problem, surgery would arrest the damage, and it's even possible that some lost function might return.

    In any case, I think if it doesn't get worse, I could overcome my gait/running form problems with some PT and such.

    He's also sending me to Physical Medicine & Rehab, which is AWESOME. My other docs have been totally indifferent to my gait problems and leg pain and lost of athleticism because my other two big symptoms are neurogenic bladder and bowel issues, along with the tingling and electrical sensations and other such common MS symptoms.

    The other docs were totally focused on that stuff, and pretty much ignored that not being able to run well, and slowness and difficulty walking, has been even harder.

    Not many people wrap their personally identity about being a person who can urinate easily. But lots of people look in the mirror and are proud and happy to see a runner looking back at them.

    I'm really glad that this doc is taking those issues seriously and will send me to someone who can sort out that piece of the puzzle, and maybe even suggest how to begin improving it.

    He couldn't really hazard a guess at diagnosis without seeing the MRIs, but, he seems competent, he's working on making sure the best-qualified person evaluates each possibility, and he even gave me hope that it might be mild stenosis after all, which is probably the most curable thing it could possibly be.

    So, thanks for all the support leading up to it. I'm feeling very hopeful that there could be not-so-terrible dx; if there is MS, he'll find it; and if no dx is to be found, I feel like he'll still take monitoring/symptom management seriously.

    Incremental good news is good...

    #2
    Oh yeah, I meant to say he's sending me to a neurosurgeon to have my minor c-spine issue evaluated. My symptoms are really very spot-on for c-spine stenosis, and a surgeon is the best specialist to make that call. Just so relieved that someone is finally really considering the best ways to really find an answer.

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      #3
      It's great to hear such encouraging news.
      "Hope for the best and plan for the worst. That way, all your surprises will be pleasant."
      Verin Mathwin, The Wheel of Time by Robert Jordan

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        #4
        What a world of difference...I'm so glad that you have connected with this new doctor and have someone on your side to figure out what is really going on!

        I hope for you that after all is said and done that you're dealing with something more easily "fixable" and that you are able to return to your original normal. I very much understand how your running and physical ability forms a part of your identity; and how hard it is to feel some of that slip away. But, even if this does end up being MS or some other similarly difficult issue, at least this doctor seems dedicated to ensuring you get the best care possible from the best sources.

        Glad to see this encouraging news! Please keep us posted as the diagnostic process continues.
        Sx since 2007; Dx Oct. 2014. Started Copaxone after Dx...praying that it's working!

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          #5
          Thanks for your comments.

          I'm not really looking at a return to my original normal--about the only diagnosis that could offer that is some kind of functional disorder, I think. But if this stenosis thing is the answer, surgery could probably stop new damage from occurring, and I could compensate for the gait issues, I think.

          I'm weirdly terrified of a stenosis dx, though. I'm way too young for it. And surgery can fix stenosis, but it can't stop the underlying arthritis from professing. And a spinal fusion would lead to more wear and tear on adjacent joints. Which means it would accelerate the progression of arthritis damage.

          It's probably foolish of me, but I'm more scared of a stenosis dx and consequent surgery than the other possible diagnoses. MS would be terrible...eventually. Stenosis would be terrible right now. With the near-certainty of more problems down the road. Sigh...

          I haven't started scheduling follow-ups follow-ups yet. I need to, but I also need a break from dealing with the diagnostic process. I need time to get comfortable in my body again. My symptoms have improved since November or so, and it's hard devoting so much energy to medical stuff, when is rather be devoting that energy to getting my life back, new disabilities and all.

          Hard to get past the disability and not think of it as huge hurdles when one has to constantly focus on the medical stuff.

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