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Please help...even Neurologist is dumbfounded

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    Please help...even Neurologist is dumbfounded

    I would so much appreciate any kind of thoughts/ideas/help. My injury was in 2004.... Blunt trauma at c3,4,5,6,7... followed by a fusion at C3,4,5 and fusion at C3-7. I have significant burning mostly in arms and hands, significant tightness/crushing from neck to feet. Hands and feet throb like they've been beaten with stick. I am on 4500 mg of neurontin, cymbalta, vicodin.....and recently had a baclofen pump implanted.
    Now for the problem: the pumpmwas implanted with the hope it would help with the stiffness/tightness....eventhough previously the Neuro felt I didn't have significant spasticity...but he had no other offering. The feelings of tightness have continuously increased since my injury (he felt it shouldn't be doing this). I asked him 2 yrs ago if it could have been more a sensory issue and not true spasticity? Now, after having gone through the pump, he wants me to do a trial for a stim. The pump initially did allow me to move my legs in a mor natural motion, but the weakness it's caused has been aweful. One other issue now.....most days it also feels as though gravity is 10x what it is.....on every part of my body from my neck down. Any ideas? I am soooooo desperate. At this rate I won't even be able to move in another year. Thank you

    #2
    Any other meds? Statins for example...

    I take acetyl-L-carnitine for the "10x gravity" fatique. They (the MS Specialists) claim I have MS. I'v got the burning, tingling, spasticity stuff...only the spasticity is significant. Makes it hard to walk.

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      #3
      denny - I am really sorry that you are struggling with burning, spasticity, weakness, and increasing planetary gravity. You have a complex problem with cervical myelopathy that would be hard to sort out through internet exchange. I would say to keep searching for the best medical care with thoughtful specialists.

      Do you trust your Neurosurgeon? Do you have a PM&R doctor who specializes in spinal cord injuries? If not, I wonder if you should go to a place like Craig Hospital for a comprehensive evaluation to sort out all your issues. I wish you had a Neurosurgeon who worked with a Physiatrist (PM&R) specialist and Pain management doc together. Maybe there is a tertiary center near where you live.

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        #4
        Originally posted by arndog View Post
        denny - I am really sorry that you are struggling with burning, spasticity, weakness, and increasing planetary gravity. You have a complex problem with cervical myelopathy that would be hard to sort out through internet exchange. I would say to keep searching for the best medical care with thoughtful specialists.

        Do you trust your Neurosurgeon? Do you have a PM&R doctor who specializes in spinal cord injuries? If not, I wonder if you should go to a place like Craig Hospital for a comprehensive evaluation to sort out all your issues. I wish you had a Neurosurgeon who worked with a Physiatrist (PM&R) specialist and Pain management doc together. Maybe there is a tertiary center near where you live.
        Thank you. I'm seeing my Neurosurgeon in 10 days. I'm hoping to go with a lot of questions about the pump, stim, and where we go from here. Just seems like there's too much guessing.....so possibly he can recommend another direction. Again, thank you for your responses

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          #5
          Originally posted by willingtocope View Post
          Any other meds? Statins for example...

          I take acetyl-L-carnitine for the "10x gravity" fatique. They (the MS Specialists) claim I have MS. I'v got the burning, tingling, spasticity stuff...only the spasticity is significant. Makes it hard to walk.
          Thank you so much...I'm going to give it a try. May I ask how much you take?

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            #6
            1000mg/twice a day. I'm 6'-2 / 250lbs. You might want to adjust.

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