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Re: [Adults AMC] Re: Need questions answered...

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  • Neal Goldsmith
    I have amc and have had surgeries on my feet when i was young. As far as pain goes during most of my life i have had very little pain. It has been in my later
    Message 1 of 10 , Aug 31, 2007
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      I have amc and have had surgeries on my feet when i was young. As far as pain goes during most of my life i have had very little pain. It has been in my later years that i have noticed the pain and i think that is many due to old age and wear and tear on my lower limbs. my hips legs knees and feet were affected upper body was good. .................. Neal

      rocks0508 <rocks0508@...> wrote: There are varying degrees of this disease represented here and I
      think each case is unique and has it own solutions and complications.
      I'm not always sure I have AMC after I see and hear some of your
      stories. But I will tell you my history and answer your questions but
      again remember that no case is exactly the same as the next one.

      I am 37 and was born with AMC. No one else in my family has it not
      even in the past. The areas affected are neck, vocal chords, jaw,
      spine, shoulders, elbows, wrists, pinkies, hips, knees, and left
      ankle. Now because I have AMC, I also have scoliosis, restrictive
      lung disease (less than 20% lung capacity), secondary pulmonary
      hypertension, the left hip is out of socket and arthritis throughout
      most of my body. Most of my abdomen organs are shifted to the right
      side. Exercise for me is almost impossible. The good thing is I only
      weigh 75 lbs and only 4'10" so obesity isn't a problem. As for my
      life span, it's not as long as most. I cannot have children or rather
      cannot carry a baby. I have severe pain everyday and don't take
      anything for it. I do get massages every week and they do help for a
      bit. I cannot sit down so I stand most of the day. I have all my
      life. I was holding a full-time demanding job until 2002 when my
      lungs started giving out. I also use oxygen (was full-time but
      currently only at night). So you see, there are varying degrees and
      each case is unique. I say do what you can for as long as you can and
      follow your doctor's guidelines. I have always hesitated to say what
      all I have because I didn't want to scare parents. But sometimes info
      is a good thing.

      Good Luck and Best Wishes.
      Roxianna

      --- In amc_adults@yahoogroups.com, "Amanda" <cabart1@...> wrote:
      >
      > I am a 28 yr old mother with AMC that has given birth to 3 beautiful
      > girls ages 8,5 & 3. My oldest has won the Presidential Physical
      > Award(that's a great deal to someone in my condition that can't even
      > run...
      > One thing I have noticed from this site is how severe it can be.. I
      > guess I'm blessed to not have it as bad. I have limited motion in my
      > ankles, knees, and arms but am able to walk and do most normal
      > things...I have a couple questions I am wondering about and need
      > answers to...
      >
      > 1.Does anybody know average life span with AMC..I feel like if our
      > limited mobility would not be able to exercise would lead to
      > unhealthy lifestyles...
      >
      > 2.DO other people hurt everyday they wake up and find it hard to
      > move?
      >
      > 3.What type of meds do you take to help with the pain and make
      > things better.
      >
      > I think all of us are blessed with what we have...I know it makes
      > each one of us stronger!
      >
      > I will submit some pictures of myself and children...
      >






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    • TERRY2745@AOL.COM
      In a message dated 8/31/2007 1:21:26 PM Eastern Daylight Time, TUCMUM@aol.com writes: I think that Theresa forgot that the other reason that she isn t in need
      Message 2 of 10 , Sep 4, 2007
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        In a message dated 8/31/2007 1:21:26 PM Eastern Daylight Time,
        TUCMUM@... writes:

        I think that Theresa forgot that the other reason that she isn't in need of
        much stronger pain meds is because she goes to massage every other week.


        OOPS, I 4got to add that part! I do think massage has helped TREMENDOUSLY!
        Between staying active & massage I am doing well with no prescription pain
        meds

        ~Theresa



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      • Amanda
        Thanks to all who have answered my questions... I have realized that all of us our different with AMC...and it s nice to find out how others are dealing with
        Message 3 of 10 , Sep 4, 2007
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          Thanks to all who have answered my questions... I have realized that
          all of us our different with AMC...and it's nice to find out how
          others are dealing with AMC

          I have pain when I first wake up in the morning and gets better but if
          I'm over active my body hurts.. that's were I have come into problems
          I am obese 175 pounds and have gained that weight from the 3 children
          and it's very hard to loose it with hurting so bad.. That's no excuse
          to go out and eat a burger either..

          That is my goal for this year is to lose weight and hopefully it will
          help with AMC..

          But again thanks to all and what a wonderful group that I have joined!

          Amanda
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