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Thread: seeking others w/ CENTRAL CORD SYNDROME

  1. #331
    Ditto Revis time for another visit to Docs

  2. #332
    Junior Member
    Join Date
    Oct 2003
    Location
    Olathe, KS,USA
    Posts
    7
    Just saw this posting about others with CCS. I have had my CCS since 9/11/84 when I was 14, after a football tackle. I was told way back then to be prepared to use a weehchair for the rest of my life. Like all who have a CCS i can walk, but my upper extremities are mostly affected. My right side is weaker than my left. I squeeze 25lbs of pressure in my right hand and 45 in my left. I am mostly effected at the c4-5 level. I have no back delts, weakend biceps, triceps, etc.. Basically all the muscle groups that give men their physicality, are affected. I was an athlete and had it all taken away from me, and no one could understand why I was so updet years later. All Anyone ever said to me was, "atleast you can walk". Ahhhhhhhhhhhhh!! Despite my deficits, zi can snow ski, golf, play tennis, etc.. But it was never good enough for so long. I was always alone, and had no one to ever talk to about this. So if anyone does want to talk, i am here, and i would love to share stories. Some of your may have seen my article onthe Christopher Reeve website titled, "Red headd step child of Spinal Cord Injuries". Because i ahe always felt that way. Can any of you relate?

    Joe
    Joerhea@joerhea.com

  3. #333
    Junior Member
    Join Date
    Aug 2008
    Location
    Southwest Alabams
    Posts
    28
    Oh yeah...I think many of us can relate. I heard, "You know it could have been so much worse. You could be in a wheelchair!" so many times that I started replying, "Wow! What a concept! I never thought of that!!" That shut them up! Seriously though, I know I can do things that wheelchair bound people can't and I do feel blessed for that, but it doesn't diminish the fact that my life was altered in a major way. Keep you chin up Joe and hang in there! We all come here to complain because we all understand.

    Jeff

  4. #334
    I went t docs last week my normal GP wasn't available so had to see another one amongst other things which none of he addressed just asked what tabs I wanted I tried to talk about Spinal condition was it CCS talk about symptoms possible solutions he couldn't even be bothered to look at my medical history and basically kicked me out pathetic thinking of getting appointment with own GP
    Current concerns
    General health
    Muscle spasms mainly upper arms and thighs
    Weakness upper arms
    Wrist and hand finger joint stiffness at times
    Stiff back all of time
    Stomach pain possible anxiety symptoms that radiates to right side above hip

    Tiredness work takes a lot out of me

  5. #335
    Really struggling now with hip and side pain very fatigued stiffness and worsening muscle spasms back upper arms and sometimes thigh vibrating feeling around back lower and stomach also loss apetite losing weight again horrible

  6. #336
    You need to see someone who is expert in spinal cord injury and neuropathic pain; not a GP. A physiatrist or neurologist would be the place to start, and then a pain specialist. What "tablets" are you taking now for your pain?

    (KLD)

  7. #337
    Thank you Nurse for replying about the only person is 6 years who really tells me anything:
    Citalopram were tabs did nothing a from making me want to stay in bed and not eat so stopped after 2 weeks, no way could I go to work with them.
    OK will see where I can go fatigue and hip pain seem the worse with muscle spams not painful just worrying

  8. #338
    Citalopram is Celexa, an antidepressant. It is not a good treatment for neuropathic pain. Drugs used most effectively for neuropathic pain include gabapentin and pregabilin. Please try to see a good neurologist or pain management specialist physician and get onto more appropriate medications.

    (KLD)

  9. #339
    Thank you and a full set bloods to rule anything else out

  10. #340
    I really don't know how I've kept going last 6 years on my own and carried on working at least I can now move forward

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