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Strange Things...

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  • Erica
    Hi. My name is Erica and I am 27 years old. I have AMC in both arms, but have come A LOT farther than the doctors at Shriners ever said I would. In the
    Message 1 of 6 , May 13, 2008
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      Hi. My name is Erica and I am 27 years old. I have AMC in both
      arms, but have come A LOT farther than the doctors at Shriners ever
      said I would. In the beginning, my mother was told that I would
      always need help dressing, bathing, and basically all other day-to-
      day things a woman needs to do. Well, I made sure that didn't
      happen. Now, I'm married and have two sons, ages 8 years & 14
      months. My husband is a Marine, so I'm alone with the kids a lot.
      Anyway...on to my problem. Within the past couple of years, I have
      noticed things getting worse. My arms have started to bend in more
      and my hands won't turn over nearly as much as they used to. My
      Shriners doctors always said that once I stopped growing, that things
      would stop progressing. So, of course, I'm very confused. Plus, I
      just found out that I have Degenerative Disc Disease and 3 herniated
      discs in my lower back. My back has been giving me lots of trouble
      for about the last 8 months, so my family doctor sent me for an MRI.
      Imagine my suprise when I heard the results. Everything I have read
      says Deg. Disc Dis. is an "old people" disease and my mom's
      chiropractor says mostly only people that have been in BAD accidents
      would be herniated discs...especially 3. And I haven't been in any
      really (or semi-) bad ones. So, I've been wondering if any of this
      could be connected to my AMC. Has anyone else had any problems with
      these things? I'm sorry for going on and on... I'm just worried
      that if I'm having all these problems at such a relativly young
      age, then what does the future hold....It really scares me. Thanks
      ahead of time for any input.
    • Amanda
      My name is Amanda and I m 28 yrs old and was told the same thing.. I would need help.. but to my stubborn attitude.. I too have been married for 8 years with 3
      Message 2 of 6 , May 15, 2008
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        My name is Amanda and I'm 28 yrs old and was told the same thing.. I
        would need help.. but to my stubborn attitude.. I too have been
        married for 8 years with 3 girls 8,6,& 3. I work as a 911 dispatcher
        and love it.. I too though feel like the older I'm getting the harder
        I'm having each day to get out of bed and do normal things. My arms
        are also bent in ..I am not allowed to straighten all the way along
        with my legs.. I do normal walking with a little limp but other than
        that... Do you take any medication for your pains.. I was curious I'm
        really considering to start something.. I've heard Celebrex is good to
        use but the heart compications is what scares me.. Let me know would
        be interested to find out what others are taking for this.

        Have a great day.
      • Erica
        Just recently I was prescribed Darvocet (for pain) and Flexiril (a muscle relaxer). They seem to work ok, but I can t take them as often as the directions say
        Message 3 of 6 , May 15, 2008
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          Just recently I was prescribed Darvocet (for pain) and Flexiril (a
          muscle relaxer). They seem to work ok, but I can't take them as often
          as the directions say to because they make me sleepy and give me that
          medicine high...with kids you just can't function like that. On
          Tuesday I go for an epidural steroid injection into my spine....for my
          lower back pain. If that doesn't help enough, the next step is
          surgery. I was having bad pain in my right shoulder and was given a
          cortisode shot. That worked for about 2 months. Everyone keeps
          suggesting physical therapy for my shoulder pain, but they don't seem
          to understand that I get enough of that with just my day-to-day
          housework and baby-lifting. My upper arms, shoulders, and the middle
          of my upper back get so tired and sore these days. A LOT more often
          that just a few years ago. It is so frustating. I'm very tempted to
          get in touch with a doctor or 2 at Shriners and see if I could get a
          consultation with them. I guess time will tell.....

          --- In amc_adults@yahoogroups.com, "Amanda" <cabart1@...> wrote:
          >
          > My name is Amanda and I'm 28 yrs old and was told the same thing.. I
          > would need help.. but to my stubborn attitude.. I too have been
          > married for 8 years with 3 girls 8,6,& 3. I work as a 911 dispatcher
          > and love it.. I too though feel like the older I'm getting the harder
          > I'm having each day to get out of bed and do normal things. My arms
          > are also bent in ..I am not allowed to straighten all the way along
          > with my legs.. I do normal walking with a little limp but other than
          > that... Do you take any medication for your pains.. I was curious I'm
          > really considering to start something.. I've heard Celebrex is good
          to
          > use but the heart compications is what scares me.. Let me know would
          > be interested to find out what others are taking for this.
          >
          > Have a great day.
          >
        • TERRY2745@AOL.COM
          Im 42 years old with AMC, I have not had to take any kind of prescription meds for pain, thankfully, YET. I keep VERY active & really try to keep my weigh at
          Message 4 of 6 , May 19, 2008
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            Im 42 years old with AMC, I have not had to take any kind of prescription
            meds for pain, thankfully, YET. I keep VERY active & really try to keep my
            weigh at what's best for me. I use BC powdered aspirin for pain. & it has helped
            a lot. I also go to massage therapy every other week & that helps also!
            ~Theresa
            my webpage--> _www.hometown.aol.com/terry2745/index.html_
            (http://www.hometown.aol.com/terry2745/index.html)




            Art Association ~Student Exhibition Coordinator
            Arthrogryposis Multiplex Congenita Support, Inc~Vice President
            _www.amcsupport.org_ (http://www.amcsupport.org/)
            BECOME A MEMBER OF AMCSI _www.amcsupport.org/member_
            (http://www.amcsupport.org/member)

            In a message dated 5/15/2008 7:58:52 AM Eastern Daylight Time,
            cabart1@... writes:

            would
            be interested to find out what others are taking for this.










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          • becky deaver
            Theresa Are your massages covered by medical insurance? I too find them very helpful. Thanks, Becky TERRY2745@AOL.COM wrote: Im 42 years old with AMC, I have
            Message 5 of 6 , May 19, 2008
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              Theresa
              Are your massages covered by medical insurance? I too find them very helpful.
              Thanks,
              Becky

              TERRY2745@... wrote:


              Im 42 years old with AMC, I have not had to take any kind of prescription
              meds for pain, thankfully, YET. I keep VERY active & really try to keep my
              weigh at what's best for me. I use BC powdered aspirin for pain. & it has helped
              a lot. I also go to massage therapy every other week & that helps also!
              ~Theresa
              my webpage--> _www.hometown.aol.com/terry2745/index.html_
              (http://www.hometown.aol.com/terry2745/index.html)

              Art Association ~Student Exhibition Coordinator
              Arthrogryposis Multiplex Congenita Support, Inc~Vice President
              _www.amcsupport.org_ (http://www.amcsupport.org/)
              BECOME A MEMBER OF AMCSI _www.amcsupport.org/member_
              (http://www.amcsupport.org/member)

              In a message dated 5/15/2008 7:58:52 AM Eastern Daylight Time,
              cabart1@... writes:

              would
              be interested to find out what others are taking for this.

              **************Wondering what's for Dinner Tonight? Get new twists on family
              favorites at AOL Food.
              (http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)

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







              [Non-text portions of this message have been removed]
            • TERRY2745@AOL.COM
              no, mines not. But my Massage Therapist is also a good friend so that helps! Some Ins. Co s are starting to cover them I think. I need to look into that
              Message 6 of 6 , May 19, 2008
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                no, mines not. But my Massage Therapist is also a good friend so that helps!
                Some Ins. Co's are starting to cover them I think. I need to look into that
                more...



                ~Theresa my webpage--> _www.hometown.aol.com/terry2745/index.html_
                (http://www.hometown.aol.com/terry2745/index.html)




                Art Association ~Student Exhibition Coordinator
                Arthrogryposis Multiplex Congenita Support, Inc~Vice President
                _www.amcsupport.org_ (http://www.amcsupport.org/)
                BECOME A MEMBER OF AMCSI _www.amcsupport.org/member_
                (http://www.amcsupport.org/member)

                In a message dated 5/19/2008 10:21:14 AM Eastern Daylight Time,
                beck0912@... writes:

                Theresa
                Are your massages covered by medical insurance? I too find them very helpful.
                Thanks,
                Becky








                **************Wondering what's for Dinner Tonight? Get new twists on family
                favorites at AOL Food.
                (http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)


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