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Re: [Adults AMC] New Member

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  • Mike Murphy
    ... New Year, I have also dealt with Childrens there is a doctor doing a study on AMC in aadults but I lost his name I am trying to get again I will let you
    Message 1 of 16 , Jan 1, 2002
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      --- becky deaver <beck0912@...> wrote:
      > Hi Mike
      > I'm also 48 and also live in Massachusetts. When I
      > needed surgery on my knee I tried all sorts of local
      > places in and around Boston for someone who knew
      > something about AMC for the surgery. I finally did
      > find a Dr. in Danvers (northshore), but he really
      > didn't know much about it either.
      > As far as I could tell in all my calls etc., Dr.s
      > here
      > are only interested in children. All doctors I was
      > able to determine had experience with AMC (like at
      > Children's Hospital Boston) would not see me because
      > I
      > am an adult.
      > I have been experiencing lots of new problems I
      > assume
      > goes with AMC and aging, so if you find a
      > group/person
      > please let me know. In the meantime if you want to
      > exchange information and things that have been
      > happening that you feel are age related (or not)
      > please feel free to also write to me off list ...or
      > onlist is fine too..
      > Becky Deaver
      > (beck9012@...)
      >
      > __________________________________________________
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      > Hi Becky thanks for the hello and the info. Happy
      New Year, I have also dealt with Childrens there is a
      doctor doing a study on AMC in aadults but I lost his
      name I am trying to get again I will let you know when
      I find out OK.

      Thanks Mike


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    • becky deaver
      Mike - thanks , I d definately appreciate that! Becky Deaver ... __________________________________________________ Do You Yahoo!? Send your FREE holiday
      Message 2 of 16 , Jan 1, 2002
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        Mike - thanks , I'd definately appreciate that!
        Becky Deaver
        --- Mike Murphy <mikemfm0047@...> wrote:

        > > Hi Becky thanks for the hello and the info. Happy
        > New Year, I have also dealt with Childrens there is
        > a
        > doctor doing a study on AMC in aadults but I lost
        > his
        > name I am trying to get again I will let you know
        > when
        > I find out OK.
        >
        > Thanks Mike
        >
        >
        > __________________________________________________
        > Do You Yahoo!?
        > Send your FREE holiday greetings online!
        > http://greetings.yahoo.com
        >


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      • rnjhamp
        Welcome Melissa! My name is Jen and I am 30 years old, with a mild case of AMC. Like you the doctors told my parents I would never walk, feed myself, etc.
        Message 3 of 16 , Nov 24, 2003
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          Welcome Melissa! My name is Jen and I am 30 years old, with a mild
          case of AMC. Like you the doctors told my parents I would never
          walk, feed myself, etc. By the age of 2.5 I had proved the docs all
          wrong. I too walk with a slight limp and drive a vehicle with no
          modifications. I am currently back in college finishing my Master's
          in Special Education. And my huband, of 10 years, and I are now
          trying to get pregnant. You sound like a very strong, independent
          woman. I think you'll find us to be a fun, supportive, diverse bunch.

          Jen H. :)
        • Roxi McCutchan
          Hey, I am Roxi and I am 34 now. My disease affects both legs and both arms, both hips, neck and spine. My left leg is about 2 inches shorter than right and I
          Message 4 of 16 , Jul 30, 2004
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            Hey, I am Roxi and I am 34 now. My disease affects both legs and both arms, both hips, neck and spine. My left leg is about 2 inches shorter than right and I have a severe curve in spine. I walk unaided but have problems sitting down and now have to use oxygen for lack of lung capacity. I have 20% lung capacity. Luckily, I have only had 2 surgeries.

            Welcome to the group. It has helped me to find other with my disease.

            Welcome
            Roxi

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          • msbells40
            hello, I am the mother of a 22 yr old with arthrogryposis. Her name is Kelly and she got married last August and lives in Germany now.She and her hub want to
            Message 5 of 16 , Mar 5 1:11 PM
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              hello, I am the mother of a 22 yr old with arthrogryposis. Her name
              is Kelly and she got married last August and lives in Germany
              now.She and her hub want to have kids. I was wondering if anyone
              could give me advice to pass onto her for example things like being
              able to carry the baby. She can walk, has a limp due to one leg
              being longer than the other, also we talked to a geneticist when she
              was small and they felt her type of AMC was not hereditary. Any help
              would be appreciated,,,thanks
            • msbells40
              I am the mother of a 25 yr old daughter (Kelly). Kelly has been in Germany for the past 4 yrs and is now living with my husband and I.She has bilateral club
              Message 6 of 16 , Jun 10, 2008
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                I am the mother of a 25 yr old daughter (Kelly). Kelly has been in
                Germany for the past 4 yrs and is now living with my husband and I.She
                has bilateral club foot, contracted wrists and had an osteotomy on her
                Right hip at 18 months of age. Her club foot has always been painful
                for her. She's had 3 surgeries on each foot over the years. Today we
                saw an orthopedic doctor and he took one look at her rt foot and said
                theres no surgery he can do to relieve her pain. He suggested
                amputation. I always knew in the back of my mind that word would come
                up. Her right foot has always been the worst affected part and no
                matter what kind of AFO's we get theres ALWAYS a problem. The doctor
                was very blunt with her and left it entirely up to her. He said if he
                did another surgery on the RT foot she would still have pain and AFO's
                would still give her no additional help. I'm wondering if anyone else
                has gone through this. I thought about getting another opinion, but I
                know just from looking at her foot that it is very deformed and so much
                scar tissue to deal with. Kelly is taking it pretty well, but has so
                many concerns running through her head
              • Allyson
                i d get a 2nd opinion, and perhaps see a pediatric that specializes in foot deformities. i say pediatric, because in my experience so far they seem to have
                Message 7 of 16 , Jun 10, 2008
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                  i'd get a 2nd opinion, and perhaps see a pediatric that specializes in foot deformities. i say pediatric, because in my experience so far they seem to have been better at addressing issues that were present since birth. both my feet were clubbed i had surgery on both at 6 months old were they pin and fussed them. my left foot has recently started to try to return to its previous position before pinning but i'm now back in afo's to correct it. both my ankles are very sensitive, my left ankle hurts where the pin was placed and along most of the scar line when i retain fluid or gain the least bit of extra weight oddly it feels as if my foot will explode when i stand up.


                  --- On Tue, 6/10/08, msbells40 <msbells40@...> wrote:

                  > From: msbells40 <msbells40@...>
                  > Subject: [Adults AMC] New Member
                  > To: amc_adults@yahoogroups.com
                  > Date: Tuesday, June 10, 2008, 4:21 PM
                  > I am the mother of a 25 yr old daughter (Kelly). Kelly has
                  > been in
                  > Germany for the past 4 yrs and is now living with my
                  > husband and I.She
                  > has bilateral club foot, contracted wrists and had an
                  > osteotomy on her
                  > Right hip at 18 months of age. Her club foot has always
                  > been painful
                  > for her. She's had 3 surgeries on each foot over the
                  > years. Today we
                  > saw an orthopedic doctor and he took one look at her rt
                  > foot and said
                  > theres no surgery he can do to relieve her pain. He
                  > suggested
                  > amputation. I always knew in the back of my mind that word
                  > would come
                  > up. Her right foot has always been the worst affected part
                  > and no
                  > matter what kind of AFO's we get theres ALWAYS a
                  > problem. The doctor
                  > was very blunt with her and left it entirely up to her. He
                  > said if he
                  > did another surgery on the RT foot she would still have
                  > pain and AFO's
                  > would still give her no additional help. I'm wondering
                  > if anyone else
                  > has gone through this. I thought about getting another
                  > opinion, but I
                  > know just from looking at her foot that it is very deformed
                  > and so much
                  > scar tissue to deal with. Kelly is taking it pretty well,
                  > but has so
                  > many concerns running through her head
                • msbells40
                  Allyson, I tried the pediatric route. No one wants to see a 25 yr old. When Kelly had all her surgeries as a baby and teenager we lived in GA. She went to
                  Message 8 of 16 , Jun 11, 2008
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                    Allyson, I tried the pediatric route. No one wants to see a 25 yr old.
                    When Kelly had all her surgeries as a baby and teenager we lived in GA.
                    She went to Scottish Rite Hospital in Atlanta and then followed up with
                    Childrens Orthopedics of Atlanta. I even tried Shriners Hospital here
                    in Greenville, SC and they wont accept anyone over 18. Seems when you
                    turn 18 all of a sudden your arthrogryposis is gone...Its sad...Linda
                  • Allyson
                    yes i ve had trouble too getting Dr. to see me. my pediatric orthopedic at children s hospital in new orleans saw me until i was 26 ish and did offer to see me
                    Message 9 of 16 , Jun 11, 2008
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                      yes i've had trouble too getting Dr. to see me. my pediatric orthopedic at children's hospital in new orleans saw me until i was 26 ish and did offer to see me if i couldn't find Dr. that knew what to do.

                      allyson


                      --- On Wed, 6/11/08, msbells40 <msbells40@...> wrote:

                      > From: msbells40 <msbells40@...>
                      > Subject: Re: [Adults AMC] New Member
                      > To: amc_adults@yahoogroups.com
                      > Date: Wednesday, June 11, 2008, 8:05 AM
                      > Allyson, I tried the pediatric route. No one wants to see a
                      > 25 yr old.
                      > When Kelly had all her surgeries as a baby and teenager we
                      > lived in GA.
                      > She went to Scottish Rite Hospital in Atlanta and then
                      > followed up with
                      > Childrens Orthopedics of Atlanta. I even tried Shriners
                      > Hospital here
                      > in Greenville, SC and they wont accept anyone over 18.
                      > Seems when you
                      > turn 18 all of a sudden your arthrogryposis is gone...Its
                      > sad...Linda
                    • Allyson
                      oh also have you seen a neurologist i know i have a ton of nerve damage from my surgery along with circulation issues in my feet, they tend to stay blue/purple
                      Message 10 of 16 , Jun 11, 2008
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                        oh also have you seen a neurologist i know i have a ton of nerve damage from my surgery along with circulation issues in my feet, they tend to stay blue/purple always and are ice cold to the touch.


                        --- On Wed, 6/11/08, msbells40 <msbells40@...> wrote:

                        > From: msbells40 <msbells40@...>
                        > Subject: Re: [Adults AMC] New Member
                        > To: amc_adults@yahoogroups.com
                        > Date: Wednesday, June 11, 2008, 8:05 AM
                        > Allyson, I tried the pediatric route. No one wants to see a
                        > 25 yr old.
                        > When Kelly had all her surgeries as a baby and teenager we
                        > lived in GA.
                        > She went to Scottish Rite Hospital in Atlanta and then
                        > followed up with
                        > Childrens Orthopedics of Atlanta. I even tried Shriners
                        > Hospital here
                        > in Greenville, SC and they wont accept anyone over 18.
                        > Seems when you
                        > turn 18 all of a sudden your arthrogryposis is gone...Its
                        > sad...Linda
                      • msbells40
                        Kelly hasnt seen a neurologist, but shes like you..cold feet and tingly. I have found her doctor in Ga that she saw as a child and called the office and spoke
                        Message 11 of 16 , Jun 11, 2008
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                          Kelly hasnt seen a neurologist, but shes like you..cold feet and
                          tingly. I have found her doctor in Ga that she saw as a child and
                          called the office and spoke with his nurse. She says usually Dr Meehan
                          refers older AMC patients to orthos, but in her case she will she what
                          she can do. I really would like to talk to him again and get a 2nd
                          opinion. The word amputation just makes my skin crawl.
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