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Re: [Adults AMC] Hi I have a serious question

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  • Roxi McCutchan
    Tracy, I m 38 almost 39. I have AMC, multi mini-core myopathy, scoliosis, restrictive lung disease, arthritis, osteoporosis, secondary pulmonary hypertension
    Message 1 of 16 , Apr 3, 2009
      Tracy,

      I'm 38 almost 39. I have AMC, multi mini-core myopathy, scoliosis, restrictive lung disease, arthritis, osteoporosis, secondary pulmonary hypertension and graves disease. My lung capacity is below 16%. In fact, it no longer registers on the test so we haven't been able to get a reading for 4 years now. I only weigh 78 lbs and I'm 4'10". This has helped with the lung disease as I don't have to carry alot of weight around. I do use oxygen at night and yes, it is getting worse. I see a geneticist, orthopedics, cardiac, pulmonary, endocrinology, and rhuematoid doctors. My suggestion is this: find a doctor that is interested in you even if he doesn't know amc. If he's vested or cares, he'll do everything to find out about it and the treatment. Only once have I gone to a doctor that knew my disease before I got there but all of them now are up-to-date and knowledgeable. If you are near Houston I can recommend my doctors. For the record, I was supposed to die
      at age 12 and then it was 20, then 30 and then 35. Just do everything you can and want to and stay active. Have your doctors check your bone density even if you are young. I just found out that my bone density is that of someone in their 70's. One thing I have learned with my restrictive lung disease is that I couldn't swim. The water pressure on my chest limited my breathing.

      If I can help, let me know.
      Roxianna




      ________________________________
      From: Tracy <mountaingirl32@...>
      To: amc_adults@yahoogroups.com
      Sent: Tuesday, March 31, 2009 6:10:55 PM
      Subject: [Adults AMC] Hi I have a serious question


      Good Evening Everyone,

      My name is Tracy, 35 years Old adult with Amc... I know this may seem like a silly question to ask but its an important one for me to ask and you will see later on...

      How many adults are in here with Arthrogryposis? ?? and have you ever been told that amc is a childhood disability only that no one survives adulthood??? OK THIS IS A MYTHICAL STATEMENT CAUSE FOR US ADULTS WE ARE STILL HERE WITH AMC, OK HERE IS ANOTHER QUESTION... With us adults who have arthrogryposis where are the doctors that take over and treat us NOW....

      ok here is why i asked all these questions...

      I did just get out of being in the hospital today... i was told yesterday that my restrictive lung disease is not going to get better, that its going to progressively get worse and could end up on a ventilator with no chance of coming off it ever... and this news scared me...

      so once again dr told me that hardly anyone with amc survive into adult hood... Wrong cause I am here and all you other ones are out there too... So Doctors where are you that treat us adults...

      and to help me feel a little bit better can you other adults with amc come and tell me your here too...

      What would you do if you were told u didnt have a lot of time to live cause of the progression of your lungs???

      Tracy







      [Non-text portions of this message have been removed]
    • Capt, Kaos
      Hi, Tracy   My name is Tim and I ve heard it all before/ BUT here I am 47 and still living and loving life. so; rock hard, live life the best you can ...
      Message 2 of 16 , Apr 6, 2009
        Hi, Tracy
         
        My name is Tim and I've heard it all before/ BUT here I am 47 and still living and loving life. so; rock hard, live life the best you can

        --- On Tue, 3/31/09, Tracy <mountaingirl32@...> wrote:

        From: Tracy <mountaingirl32@...>
        Subject: [Adults AMC] Hi I have a serious question
        To: amc_adults@yahoogroups.com
        Date: Tuesday, March 31, 2009, 7:10 PM






        Good Evening Everyone,

        My name is Tracy, 35 years Old adult with Amc... I know this may seem like a silly question to ask but its an important one for me to ask and you will see later on...

        How many adults are in here with Arthrogryposis? ?? and have you ever been told that amc is a childhood disability only that no one survives adulthood??? OK THIS IS A MYTHICAL STATEMENT CAUSE FOR US ADULTS WE ARE STILL HERE WITH AMC, OK HERE IS ANOTHER QUESTION... With us adults who have arthrogryposis where are the doctors that take over and treat us NOW....

        ok here is why i asked all these questions...

        I did just get out of being in the hospital today... i was told yesterday that my restrictive lung disease is not going to get better, that its going to progressively get worse and could end up on a ventilator with no chance of coming off it ever... and this news scared me...

        so once again dr told me that hardly anyone with amc survive into adult hood... Wrong cause I am here and all you other ones are out there too... So Doctors where are you that treat us adults...

        and to help me feel a little bit better can you other adults with amc come and tell me your here too...

        What would you do if you were told u didnt have a lot of time to live cause of the progression of your lungs???

        Tracy



















        [Non-text portions of this message have been removed]
      • janet cresswell
        Hi, Tracy I know a lot of adults with AMC; I heard one lived until she was 80 years old. I am 47 years old and live life to the full and to my restricted
        Message 3 of 16 , Apr 14, 2009
          Hi, Tracy
          I know a lot of adults with AMC; I heard one lived until she was 80 years
          old.
          I am 47 years old and live life to the full and to my restricted mobility.
          Luckily I don't have internal problems with my organs but all my limbs are
          severely affected. When I was born in 1961 My family were told I would never
          walk, sit up and would probably die in childhood.
          So I was put in foster care and went on to have 26 operations, 2 marriages,
          numerous jobs, a degree in creative writing and two healthy children. So don
          t believe the doctors just do what you can do...
          Take Care
          Janet from UK


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

          From: Capt, Kaos
          Date: 04/06/09 19:59:39
          To: amc_adults@yahoogroups.com
          Subject: Re: [Adults AMC] Hi I have a serious question

          Hi, Tracy

          My name is Tim and I've heard it all before/ BUT here I am 47 and still
          living and loving life. so; rock hard, live life the best you can

          --- On Tue, 3/31/09, Tracy <mountaingirl32@...> wrote:

          From: Tracy <mountaingirl32@...>
          Subject: [Adults AMC] Hi I have a serious question
          To: amc_adults@yahoogroups.com
          Date: Tuesday, March 31, 2009, 7:10 PM

          Good Evening Everyone,

          My name is Tracy, 35 years Old adult with Amc... I know this may seem like a
          silly question to ask but its an important one for me to ask and you will
          see later on...

          How many adults are in here with Arthrogryposis? ?? and have you ever been
          told that amc is a childhood disability only that no one survives
          adulthood??? OK THIS IS A MYTHICAL STATEMENT CAUSE FOR US ADULTS WE ARE
          STILL HERE WITH AMC, OK HERE IS ANOTHER QUESTION... With us adults who have
          arthrogryposis where are the doctors that take over and treat us NOW....

          ok here is why i asked all these questions...

          I did just get out of being in the hospital today... i was told yesterday
          that my restrictive lung disease is not going to get better, that its going
          to progressively get worse and could end up on a ventilator with no chance
          of coming off it ever... and this news scared me...

          so once again dr told me that hardly anyone with amc survive into adult hood
          .. Wrong cause I am here and all you other ones are out there too... So
          Doctors where are you that treat us adults...

          and to help me feel a little bit better can you other adults with amc come
          and tell me your here too...

          What would you do if you were told u didnt have a lot of time to live cause
          of the progression of your lungs???

          Tracy

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





          [Non-text portions of this message have been removed]
        • morne vanWyk
          Hi Lauren,   Um, I am still in the process of analyzing the data that I have. Some interesting things came to light during my research, with the person with
          Message 4 of 16 , Apr 17, 2009
            Hi Lauren,
             
            Um, I am still in the process of analyzing the data that I have. Some interesting things came to light during my research, with the person with AMC..... 
             
            About your second question- I am trained as a research psychologist. I am intersted to know what your interested field in psychology is....let me know..
             
            Best wishes
            Morne 

            --- On Wed, 4/1/09, whopinwheels <LSteinberg@...> wrote:


            From: whopinwheels <LSteinberg@...>
            Subject: [Adults AMC] Re: Hi I have a serious question
            To: amc_adults@yahoogroups.com
            Date: Wednesday, April 1, 2009, 8:25 PM






            Hi Morne,
            I'd be really interested in hearing more about what you find out with your thesis. What is your area of study? I got my BA in psychology about a year ago and am contemplating grad school for the somewhat near future.
            Lauren
            --- In amc_adults@yahoogro ups.com, morne vanWyk <vanwyk.morne@ ...> wrote:
            >
            > Hi Tracy,
            >
            > Wow! That sounds serious (what u were told by the dr.). Well, my name is Morne and I am 34 years old. I have a very light form of arthrogryposis. From what I can remember during my childhood, me or my mom were NEVER told that I wouldn't live to see adulthood. I am currently busy with a thesis involving AMC and it revolves around the social coping experiences of an adolescent with AMC. Well, I did extencive research on arthrogryposis and some of my findings included the fact that, in general, people with AMC have a good prognosis. There are also various grades of severity and therefore it depends on how severe your arthrogryposis is. I have seen pictures of a baby who did not survive long after birth because of SEVERE AMC. But, according to my research, that is not the norm (for people NOT to survive AMC).
            > There are also various types of arthrogryposis and a very small percentage could be fatal, like Distal Arthrogryposis.
            >
            > On your second question - well, a couple of years ago, I went to a hospital in Cape Town (I'm South African), and I wanted doctors there to tell me more about AMC. Low and behold, they couldn't because they did not know much about the condition, because it is so rare. So the asked ME to educate them about arthrogryposis, LOL!!!!!! It made me realize that all doctors actually know about AMC.....(When I visited the hospital in Cape Town, one doctor said to me that during their exams, they only had TWO questions about AMC, during the whole paper. That sums it up, doesn't it?)
            >
            > I think a pediatrician specializing in congenital chilhood diseases might be able to answer some of you questions... ....
            >
            > Best wishes,
            > Morne
            >
            > --- On Wed, 4/1/09, Tracy <mountaingirl32@ ...> wrote:
            >
            >
            > From: Tracy <mountaingirl32@ ...>
            > Subject: [Adults AMC] Hi I have a serious question
            > To: amc_adults@yahoogro ups.com
            > Date: Wednesday, April 1, 2009, 2:10 AM
            >
            >
            >
            >
            >
            >
            > Good Evening Everyone,
            >
            > My name is Tracy, 35 years Old adult with Amc... I know this may seem like a silly question to ask but its an important one for me to ask and you will see later on...
            >
            > How many adults are in here with Arthrogryposis? ?? and have you ever been told that amc is a childhood disability only that no one survives adulthood??? OK THIS IS A MYTHICAL STATEMENT CAUSE FOR US ADULTS WE ARE STILL HERE WITH AMC, OK HERE IS ANOTHER QUESTION... With us adults who have arthrogryposis where are the doctors that take over and treat us NOW....
            >
            > ok here is why i asked all these questions...
            >
            > I did just get out of being in the hospital today... i was told yesterday that my restrictive lung disease is not going to get better, that its going to progressively get worse and could end up on a ventilator with no chance of coming off it ever... and this news scared me...
            >
            > so once again dr told me that hardly anyone with amc survive into adult hood... Wrong cause I am here and all you other ones are out there too... So Doctors where are you that treat us adults...
            >
            > and to help me feel a little bit better can you other adults with amc come and tell me your here too...
            >
            > What would you do if you were told u didnt have a lot of time to live cause of the progression of your lungs???
            >
            > Tracy
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            >
            > [Non-text portions of this message have been removed]
            >



















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