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Re: [Adults AMC] Losing the Use of my Legs

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  • Tracy Rousar
    Hey Roxi I can understand your frustration cause I am going thru that too... I am 34 going on 35 this month.. But in a way I have my caregivers helping me
    Message 1 of 9 , Nov 1, 2008
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      Hey Roxi

      I can understand your frustration cause I am going thru that too... I am 34
      going on 35 this month.. But in a way I have my caregivers helping me push
      to keep mobile as much as possible.... Have you seen an orthopeadic.? And
      what are they saying now to you... I had hip repacements on both hips to
      help prolong the wheelchair but I still have to use it...

      I want to thankyou too my lung capacity is 38% capacity... If you want to
      chat you can add me on yahoo... amc_jazzy_t

      I am 4 ft 8 and over 200 lbs trying to figure out how to get the weight off
      .. How old are you??? Well I am gonna go for now hope to hear back from
      you...

      Tracy

      -------Original Message-------

      From: rocks0508
      Date: 10/31/08 11:26:36
      To: amc_adults@yahoogroups.com
      Subject: [Adults AMC] Losing the Use of my Legs

      I need some information. I have AMC and scoliosis. I have been able to
      walk and stand all my life. Now however, there is alot of pain in my
      legs and it can't be explained. My leg has also been giving out and
      I've nearly fallen many times. I can no longer climb stairs or even
      steps without assistance.Has anyone else had this happen? If so, do you
      mind sharing the doctor that is working on it so that my doctor can get
      some information as to what to do? Sitting for a long period of time
      isn't an option. Please help if you can.

      Roxi





      [Non-text portions of this message have been removed]
    • Denise Patterson
      I ve been there.  I found that the problem wasn t my legs but my spine.  I limped and it finally wore our the lower vertebrae to the point that it pressed on
      Message 2 of 9 , Nov 1, 2008
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        I've been there.  I found that the problem wasn't my legs but my spine.  I limped and it finally wore our the lower vertebrae to the point that it pressed on the nerves.  I'm using crutches and a manual wheel chair for long distances.  The only other option available to me was to fuse the spine.  By doing that I would lose a lot of movement, so that really is not a good option for me. 
         Denise
        Dogs are not our whole life,
        But they make our lives whole.

        [Non-text portions of this message have been removed]
      • Tiffany Holmlund
        IN THE LAST YEAR MY LEGS ARE DOING THE SAMETHING AND MY DOCTOR JUST BLEW IT OFF SAYS ITS NORMAL WITH AMC BUT SHE HAS NO IDEA. I SHOULD NOT BE GETTING WORSE BUT
        Message 3 of 9 , Nov 1, 2008
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          IN THE LAST YEAR MY LEGS ARE DOING THE SAMETHING AND MY DOCTOR JUST BLEW IT OFF SAYS ITS NORMAL WITH AMC BUT SHE HAS NO IDEA. I SHOULD NOT BE GETTING WORSE BUT I AM AND I CAN'T EXPLAIN IT EITHER. SO ANY HELP IS COOL WITH ME. TINY TIGER

          --- On Fri, 10/31/08, rocks0508 <rocks0508@...> wrote:

          From: rocks0508 <rocks0508@...>
          Subject: [Adults AMC] Losing the Use of my Legs
          To: amc_adults@yahoogroups.com
          Date: Friday, October 31, 2008, 11:26 AM






          I need some information. I have AMC and scoliosis. I have been able to
          walk and stand all my life. Now however, there is alot of pain in my
          legs and it can't be explained. My leg has also been giving out and
          I've nearly fallen many times. I can no longer climb stairs or even
          steps without assistance.Has anyone else had this happen? If so, do you
          mind sharing the doctor that is working on it so that my doctor can get
          some information as to what to do? Sitting for a long period of time
          isn't an option. Please help if you can.

          Roxi


















          [Non-text portions of this message have been removed]
        • Roxi McCutchan
          I am 4 10 and 78 pounds and 38 years old. My hips are fine except for some rotation and arthritis. My orthopedic doctor has never seen a case of this except
          Message 4 of 9 , Nov 1, 2008
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            I am 4' 10" and 78 pounds and 38 years old. My hips are fine except for some rotation and arthritis. My orthopedic doctor has never seen a case of this except me so a little lost.




            ________________________________
            From: Tracy Rousar <mountaingirl32@...>
            To: amc_adults@yahoogroups.com
            Sent: Saturday, November 1, 2008 6:03:30 AM
            Subject: Re: [Adults AMC] Losing the Use of my Legs


            Hey Roxi

            I can understand your frustration cause I am going thru that too... I am 34
            going on 35 this month.. But in a way I have my caregivers helping me push
            to keep mobile as much as possible.... Have you seen an orthopeadic. ? And
            what are they saying now to you... I had hip repacements on both hips to
            help prolong the wheelchair but I still have to use it...

            I want to thankyou too my lung capacity is 38% capacity... If you want to
            chat you can add me on yahoo... amc_jazzy_t

            I am 4 ft 8 and over 200 lbs trying to figure out how to get the weight off
            .. How old are you??? Well I am gonna go for now hope to hear back from
            you...

            Tracy

            -------Original Message----- --

            From: rocks0508
            Date: 10/31/08 11:26:36
            To: amc_adults@yahoogro ups.com
            Subject: [Adults AMC] Losing the Use of my Legs

            I need some information. I have AMC and scoliosis. I have been able to
            walk and stand all my life. Now however, there is alot of pain in my
            legs and it can't be explained. My leg has also been giving out and
            I've nearly fallen many times. I can no longer climb stairs or even
            steps without assistance.Has anyone else had this happen? If so, do you
            mind sharing the doctor that is working on it so that my doctor can get
            some information as to what to do? Sitting for a long period of time
            isn't an option. Please help if you can.

            Roxi





            [Non-text portions of this message have been removed]






            [Non-text portions of this message have been removed]
          • Roxi McCutchan
            I already have a steel rod fused to my spine and have since I was 10. I ll mention the nerve test to my doctor. If either you are jazzy_t wouldn t mind sharing
            Message 5 of 9 , Nov 1, 2008
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              I already have a steel rod fused to my spine and have since I was 10. I'll mention the nerve test to my doctor. If either you are jazzy_t wouldn't mind sharing your doctors so that my doctor can contact them and ask questions about my case and maybe get a different prospective on my situation, you can email their info to me privately. If not, that's ok. At least I can pass this along. Thanks




              ________________________________
              From: Denise Patterson <jrtowner2008@...>
              To: amc_adults@yahoogroups.com
              Sent: Saturday, November 1, 2008 8:28:33 AM
              Subject: [Adults AMC] Re: Losing the Use of my Legs


              I've been there.  I found that the problem wasn't my legs but my spine.  I limped and it finally wore our the lower vertebrae to the point that it pressed on the nerves.  I'm using crutches and a manual wheel chair for long distances.  The only other option available to me was to fuse the spine.  By doing that I would lose a lot of movement, so that really is not a good option for me. 
               Denise
              Dogs are not our whole life,
              But they make our lives whole.

              [Non-text portions of this message have been removed]






              [Non-text portions of this message have been removed]
            • Tiffany Holmlund
              I am 4 6 and 85lbs i am 32 and i have aways had trouble with hips but the pain and weakness just keeps getting worse ... From: Roxi McCutchan
              Message 6 of 9 , Nov 1, 2008
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                I am 4' 6'' and 85lbs i'am 32 and i have aways had trouble with hips but the pain and weakness just keeps getting worse

                --- On Sat, 11/1/08, Roxi McCutchan <rocks0508@...> wrote:

                From: Roxi McCutchan <rocks0508@...>
                Subject: Re: [Adults AMC] Losing the Use of my Legs
                To: amc_adults@yahoogroups.com
                Date: Saturday, November 1, 2008, 12:35 PM






                I am 4' 10" and 78 pounds and 38 years old. My hips are fine except for some rotation and arthritis. My orthopedic doctor has never seen a case of this except me so a little lost.

                ____________ _________ _________ __
                From: Tracy Rousar <mountaingirl32@ sbcglobal. net>
                To: amc_adults@yahoogro ups.com
                Sent: Saturday, November 1, 2008 6:03:30 AM
                Subject: Re: [Adults AMC] Losing the Use of my Legs

                Hey Roxi

                I can understand your frustration cause I am going thru that too... I am 34
                going on 35 this month.. But in a way I have my caregivers helping me push
                to keep mobile as much as possible.... Have you seen an orthopeadic. ? And
                what are they saying now to you... I had hip repacements on both hips to
                help prolong the wheelchair but I still have to use it...

                I want to thankyou too my lung capacity is 38% capacity... If you want to
                chat you can add me on yahoo... amc_jazzy_t

                I am 4 ft 8 and over 200 lbs trying to figure out how to get the weight off
                .. How old are you??? Well I am gonna go for now hope to hear back from
                you...

                Tracy

                -------Original Message----- --

                From: rocks0508
                Date: 10/31/08 11:26:36
                To: amc_adults@yahoogro ups.com
                Subject: [Adults AMC] Losing the Use of my Legs

                I need some information. I have AMC and scoliosis. I have been able to
                walk and stand all my life. Now however, there is alot of pain in my
                legs and it can't be explained. My leg has also been giving out and
                I've nearly fallen many times. I can no longer climb stairs or even
                steps without assistance.Has anyone else had this happen? If so, do you
                mind sharing the doctor that is working on it so that my doctor can get
                some information as to what to do? Sitting for a long period of time
                isn't an option. Please help if you can.

                Roxi

                [Non-text portions of this message have been removed]

                [Non-text portions of this message have been removed]


















                [Non-text portions of this message have been removed]
              • Tiffany Holmlund
                i m not trying to be rude but does the rod help or make it worse? i have to decide if thats a option or not because i have 2 kids and i need to keep being
                Message 7 of 9 , Nov 1, 2008
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                  i'm not trying to be rude but does the rod help or make it worse? i have to decide if thats a option or not because i have 2 kids and i need to keep being active. So please let me know something good or bad. Tiny Tiger

                  --- On Sat, 11/1/08, Roxi McCutchan <rocks0508@...> wrote:

                  From: Roxi McCutchan <rocks0508@...>
                  Subject: Re: [Adults AMC] Re: Losing the Use of my Legs
                  To: amc_adults@yahoogroups.com
                  Date: Saturday, November 1, 2008, 12:38 PM






                  I already have a steel rod fused to my spine and have since I was 10. I'll mention the nerve test to my doctor. If either you are jazzy_t wouldn't mind sharing your doctors so that my doctor can contact them and ask questions about my case and maybe get a different prospective on my situation, you can email their info to me privately. If not, that's ok. At least I can pass this along. Thanks

                  ____________ _________ _________ __
                  From: Denise Patterson <jrtowner2008@ att.net>
                  To: amc_adults@yahoogro ups.com
                  Sent: Saturday, November 1, 2008 8:28:33 AM
                  Subject: [Adults AMC] Re: Losing the Use of my Legs

                  I've been there.  I found that the problem wasn't my legs but my spine.  I limped and it finally wore our the lower vertebrae to the point that it pressed on the nerves.  I'm using crutches and a manual wheel chair for long distances.  The only other option available to me was to fuse the spine.  By doing that I would lose a lot of movement, so that really is not a good option for me. 
                   Denise
                  Dogs are not our whole life,
                  But they make our lives whole.

                  [Non-text portions of this message have been removed]

                  [Non-text portions of this message have been removed]


















                  [Non-text portions of this message have been removed]
                • Brenda
                  I think it depends on each situation... I have a rod due to scoliosis and also have restrictive lung disease.  I had the rod put in 1991.  I know they have
                  Message 8 of 9 , Nov 2, 2008
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                    I think it depends on each situation... I have a rod due to scoliosis and also have restrictive lung disease.  I had the rod put in 1991.  I know they have made a lot of advances and improvements since then. 
                     
                    Realistically, the Rod saved my life because it stopped the progression of the curve.  During the surgery they also improved the curvature somewhat.  But the main point of the surgery was stop the progression of the curve.... if left it could have smothered my lungs and crushed my heart.  Even adults can experience a worsing of the curve so it's good to have it checked.
                     
                    So... my advice would be to see if you can see a scoliosis specialist and discuss with him or her your case.
                     
                    If you have questions about my experience let me know.
                     
                    Brenda
                    Beekayn@...

                    --- On Sat, 11/1/08, Tiffany Holmlund <tiny292796@...> wrote:

                    From: Tiffany Holmlund <tiny292796@...>
                    Subject: Re: [Adults AMC] Re: Losing the Use of my Legs
                    To: amc_adults@yahoogroups.com
                    Date: Saturday, November 1, 2008, 11:46 AM






                    i'm not trying to be rude but does the rod help or make it worse? i have to decide if thats a option or not because i have 2 kids and i need to keep being active. So please let me know something good or bad. Tiny Tiger

                    --- On Sat, 11/1/08, Roxi McCutchan <rocks0508@yahoo. com> wrote:

                    From: Roxi McCutchan <rocks0508@yahoo. com>
                    Subject: Re: [Adults AMC] Re: Losing the Use of my Legs
                    To: amc_adults@yahoogro ups.com
                    Date: Saturday, November 1, 2008, 12:38 PM

                    I already have a steel rod fused to my spine and have since I was 10. I'll mention the nerve test to my doctor. If either you are jazzy_t wouldn't mind sharing your doctors so that my doctor can contact them and ask questions about my case and maybe get a different prospective on my situation, you can email their info to me privately. If not, that's ok. At least I can pass this along. Thanks

                    ____________ _________ _________ __
                    From: Denise Patterson <jrtowner2008@ att.net>
                    To: amc_adults@yahoogro ups.com
                    Sent: Saturday, November 1, 2008 8:28:33 AM
                    Subject: [Adults AMC] Re: Losing the Use of my Legs

                    I've been there.  I found that the problem wasn't my legs but my spine.  I limped and it finally wore our the lower vertebrae to the point that it pressed on the nerves.  I'm using crutches and a manual wheel chair for long distances.  The only other option available to me was to fuse the spine.  By doing that I would lose a lot of movement, so that really is not a good option for me. 
                     Denise
                    Dogs are not our whole life,
                    But they make our lives whole.

                    [Non-text portions of this message have been removed]

                    [Non-text portions of this message have been removed]

                    [Non-text portions of this message have been removed]


















                    [Non-text portions of this message have been removed]
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