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Re: [huntington's at risk] Does anyone in group know..................

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  • Pamela DelSignore
    Hi Toni, Sorry to hear that your DIL is not having success. And Yes yor older son is pretty much right. If the fetus tests positive then your DIL will know
    Message 1 of 13 , Dec 1, 2003
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      Hi Toni,
      Sorry to hear that your DIL is not having success.  And Yes yor older son is pretty much right. If the fetus tests positive then your DIL will know her gene status as well.  But she still will not know when her symptoms will start to show.
      Hope this helps, sorry the news is not better.
      Pamela

      Toni <tonisurman@...> wrote:
      Hello all..it's that stranger Toni from Ct..DIL's second attempt at
      invitro failed..they are researching amniosenthesis..hmmm..my older
      son seems to think if fetus shows HD gene that means DIL DEFINITELY
      HAS THE DISEASE..I am wondering if anyone knows if this is true..she
      is VERY UPSET the invitro failed..and is not too receptive to trying
      amnio..and also aborting fetus if it has the HD gene..I see a little
      trouble in Paradise..meaning the marriage lately..thanks for any help
      you can give me ..or even where to look to research this
      matter..thanx and Happy Holiday to all you fine people..Toni



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    • Steve
      Toni, Hi Toni! Pamela is correct. I am not a big fan of counseling or the mental health profession. But it does have it s place. And I think some genetic
      Message 2 of 13 , Dec 1, 2003
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        Toni,
         
        Hi Toni!  Pamela is correct.
         
        I am not a big fan of counseling or the mental health profession.  But it does have it's place.  And I think some genetic counseling might be in order here.
         
        Love,
         
        Steve

        Hi Toni,
        Sorry to hear that your DIL is not having success.  And Yes yor older son is pretty much right. If the fetus tests positive then your DIL will know her gene status as well.  But she still will not know when her symptoms will start to show.
        Hope this helps, sorry the news is not better.
        Pamela

        Toni <tonisurman@...> wrote:
        Hello all..it's that stranger Toni from Ct..DIL's second attempt at
        invitro failed..they are researching amniosenthesis..hmmm..my older
        son seems to think if fetus shows HD gene that means DIL DEFINITELY
        HAS THE DISEASE..I am wondering if anyone knows if this is true..she
        is VERY UPSET the invitro failed..and is not too receptive to trying
        amnio..and also aborting fetus if it has the HD gene..I see a little
        trouble in Paradise..meaning the marriage lately..thanks for any help
        you can give me ..or even where to look to research this
        matter..thanx and Happy Holiday to all you fine people..Toni



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      • Toni Surman
        Dear Pamela..thank you sooo much for getting back to me so quickly..that is not good news, but it is what we thought..answers many questions to why she is
        Message 3 of 13 , Dec 1, 2003
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          Dear Pamela..thank you sooo much for getting back to me so quickly..that is not good
          news, but it is what we thought..answers many questions to why she is sooooo leary of going that route..Toni
          Pamela DelSignore <pamdel1@...> wrote:
          Hi Toni,
          Sorry to hear that your DIL is not having success.  And Yes yor older son is pretty much right. If the fetus tests positive then your DIL will know her gene status as well.  But she still will not know when her symptoms will start to show.
          Hope this helps, sorry the news is not better.
          Pamela

          Toni <tonisurman@...> wrote:
          Hello all..it's that stranger Toni from Ct..DIL's second attempt at
          invitro failed..they are researching amniosenthesis..hmmm..my older
          son seems to think if fetus shows HD gene that means DIL DEFINITELY
          HAS THE DISEASE..I am wondering if anyone knows if this is true..she
          is VERY UPSET the invitro failed..and is not too receptive to trying
          amnio..and also aborting fetus if it has the HD gene..I see a little
          trouble in Paradise..meaning the marriage lately..thanks for any help
          you can give me ..or even where to look to research this
          matter..thanx and Happy Holiday to all you fine people..Toni



          To unsubscribe from this group, send an email to:
          huntingtonsatrisk-unsubscribe@yahoogroups.com



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          You must do the thing you think you can not do. Eleanor Roosevelt


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           Peace..Toni


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        • kelmcg@thezaz.com
          I m sorry to hear about the Invetro. I hopeeverythig works out with whatever you try next. Where abouts do you live in CT. I live in MA and I go down to CT all
          Message 4 of 13 , Dec 1, 2003
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            I'm sorry to hear about the Invetro. I hopeeverythig works out with whatever
            you try next. Where abouts do you live in CT. I live in MA and I go down to CT
            all the time. I've been looking for someone to get together with. If you dont'
            want to, it's ok.
            Kelly






            > Toni <tonisurman@...> wrote:
            > Hello all..it's that stranger Toni from Ct..DIL's second attempt at
            > invitro failed..they are researching amniosenthesis..hmmm..my older
            > son seems to think if fetus shows HD gene that means DIL DEFINITELY
            > HAS THE DISEASE..I am wondering if anyone knows if this is true..she
            > is VERY UPSET the invitro failed..and is not too receptive to trying
            > amnio..and also aborting fetus if it has the HD gene..I see a little
            > trouble in Paradise..meaning the marriage lately..thanks for any help
            > you can give me ..or even where to look to research this
            > matter..thanx and Happy Holiday to all you fine people..Toni
            >
            >
            > Yahoo! Groups SponsorADVERTISEMENT
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            > To unsubscribe from this group, send an email to:
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            >
            >
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            >
            > You must do the thing you think you can not do. Eleanor Roosevelt
            >
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          • Toni Surman
            Hi Kelly..I m in Greenwich...NY border..I m not a very active member in the group..but I try to keep up with the posts..My DIL s family has the HD gene..her 2
            Message 5 of 13 , Dec 2, 2003
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              Hi Kelly..I'm in Greenwich...NY border..I'm not a very active member in the group..but I try to keep up with the posts..My DIL's family has the HD gene..her 2 sisters are in progressive stages..write back when you have time..thanks for caring..Toni

              kelmcg@... wrote:
              I'm sorry to hear about the Invetro. I hopeeverythig works out with whatever
              you try next. Where abouts do you live in CT. I live in MA and I go down to CT
              all the time. I've been looking for someone to get together with. If you dont'
              want to, it's ok.
              Kelly






              > Toni <tonisurman@...> wrote:
              > Hello all..it's that stranger Toni from Ct..DIL's second attempt at
              > invitro failed..they are researching amniosenthesis..hmmm..my older
              > son seems to think if fetus shows HD gene that means DIL DEFINITELY
              > HAS THE DISEASE..I am wondering if anyone knows if this is true..she
              > is VERY UPSET the invitro failed..and is not too receptive to trying
              > amnio..and also aborting fetus if it has the HD gene..I see a little
              > trouble in Paradise..meaning the marriage lately..thanks for any help
              > you can give me ..or even where to look to research this
              > matter..thanx and Happy Holiday to all you fine people..Toni
              >
              >
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              >
              >
              >
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              >
              > You must do the thing you think you can not do. Eleanor Roosevelt
              >
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               Peace..Toni


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            • kelmcg@thezaz.com
              Hi Toni, I m usually in Weathersfield. I don t exactly know how far that is from Greenwich. I m not either but I still would like to get together with someone,
              Message 6 of 13 , Dec 3, 2003
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                Hi Toni, I'm usually in Weathersfield. I don't exactly know how far that is
                from Greenwich. I'm not either but I still would like to get together with
                someone, it's alright. My mom has HD and I have one little brother and one
                little sister who are also at risk. I turn 18 soon and I have choosen to get
                tested and I'm scared to death. Kelly







                Quoting Toni Surman <tonisurman@...>:

                > Hi Kelly..I'm in Greenwich...NY border..I'm not a very active member in the
                > group..but I try to keep up with the posts..My DIL's family has the HD
                > gene..her 2 sisters are in progressive stages..write back when you have
                > time..thanks for caring..Toni
                >
                > kelmcg@... wrote:I'm sorry to hear about the Invetro. I hopeeverythig
                > works out with whatever
                > you try next. Where abouts do you live in CT. I live in MA and I go down to
                > CT
                > all the time. I've been looking for someone to get together with. If you
                > dont'
                > want to, it's ok.
                > Kelly
                >
                >
                >
                >
                >
                >
                > > Toni <tonisurman@...> wrote:
                > > Hello all..it's that stranger Toni from Ct..DIL's second attempt at
                > > invitro failed..they are researching amniosenthesis..hmmm..my older
                > > son seems to think if fetus shows HD gene that means DIL DEFINITELY
                > > HAS THE DISEASE..I am wondering if anyone knows if this is true..she
                > > is VERY UPSET the invitro failed..and is not too receptive to trying
                > > amnio..and also aborting fetus if it has the HD gene..I see a little
                > > trouble in Paradise..meaning the marriage lately..thanks for any help
                > > you can give me ..or even where to look to research this
                > > matter..thanx and Happy Holiday to all you fine people..Toni
                > >
                > >
                > > Yahoo! Groups SponsorADVERTISEMENT
                > >
                > > To unsubscribe from this group, send an email to:
                > > huntingtonsatrisk-unsubscribe@yahoogroups.com
                > >
                > >
                > >
                > > Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
                > >
                > > You must do the thing you think you can not do. Eleanor Roosevelt
                > >
                > > ---------------------------------
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                > > Free Pop-Up Blocker - Get it now
                >
                >
                >
                >
                > Yahoo! Groups SponsorADVERTISEMENT
                >
                > To unsubscribe from this group, send an email to:
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                >
                >
                >
                > Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
                >
                >
                >
                >
                > Peace..Toni
                >
                >
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              • laxgrl3969@aol.com
                Im On Long Island!!! Anyone near there?
                Message 7 of 13 , Dec 3, 2003
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                  Im On Long Island!!! Anyone near there?
                • Toni Surman
                  Hi neighbor..I m across the water in Greenwich, Ct..nice to meet ya! laxgrl3969@aol.com wrote:Im On Long Island!!! Anyone near there? Yahoo! Groups
                  Message 8 of 13 , Dec 4, 2003
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                    Hi neighbor..I'm across the water in Greenwich, Ct..nice to meet ya!

                    laxgrl3969@... wrote:
                    Im On Long Island!!!  Anyone near there?


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                     Peace..Toni


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                  • Toni Surman
                    Hi Kelly..Wethersfield is almost 2 hrs away from me ..I am on the NY border..I don t blame you about being scared to death..that is very brave of you to get
                    Message 9 of 13 , Dec 5, 2003
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                      Hi Kelly..Wethersfield is almost 2 hrs away from me ..I am on the NY border..I don't blame you about being scared to death..that is very brave of you to get tested..my daughter in law was tested before they did the 2 invitro's but she did not want to know the results..so the doctors know, but she doesn't!..anyway, keep in touch..Toni

                      kelmcg@... wrote:
                      Hi Toni, I'm usually in Weathersfield. I don't exactly know how far that is
                      from Greenwich. I'm not either but I still would like to get together with
                      someone, it's alright. My mom has HD and I have one little brother and one
                      little sister who are also at risk. I turn 18 soon and I have choosen to get
                      tested and I'm scared to death. Kelly







                      Quoting Toni Surman <tonisurman@...>:

                      > Hi Kelly..I'm in Greenwich...NY border..I'm not a very active member in the
                      > group..but I try to keep up with the posts..My DIL's family has the HD
                      > gene..her 2 sisters are in progressive stages..write back when you have
                      > time..thanks for caring..Toni
                      >
                      > kelmcg@... wrote:I'm sorry to hear about the Invetro. I hopeeverythig
                      > works out with whatever
                      > you try next. Where abouts do you live in CT. I live in MA and I go down to
                      > CT
                      > all the time. I've been looking for someone to get together with. If you
                      > dont'
                      > want to, it's ok.
                      > Kelly
                      >
                      >
                      >
                      >
                      >
                      >
                      > > Toni <tonisurman@...> wrote:
                      > > Hello all..it's that stranger Toni from Ct..DIL's second attempt at
                      > > invitro failed..they are researching amniosenthesis..hmmm..my older
                      > > son seems to think if fetus shows HD gene that means DIL DEFINITELY
                      > > HAS THE DISEASE..I am wondering if anyone knows if this is true..she
                      > > is VERY UPSET the invitro failed..and is not too receptive to trying
                      > > amnio..and also aborting fetus if it has the HD gene..I see a little
                      > > trouble in Paradise..meaning the marriage lately..thanks for any help
                      > > you can give me ..or even where to look to research this
                      > > matter..thanx and Happy Holiday to all you fine people..Toni
                      > >
                      > >
                      > > Yahoo! Groups SponsorADVERTISEMENT
                      > >
                      > > To unsubscribe from this group, send an email to:
                      > > huntingtonsatrisk-unsubscribe@yahoogroups.com
                      > >
                      > >
                      > >
                      > > Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
                      > >
                      > > You must do the thing you think you can not do. Eleanor Roosevelt
                      > >
                      > > ---------------------------------
                      > > Do you Yahoo!?
                      > > Free Pop-Up Blocker - Get it now
                      >
                      >
                      >
                      >
                      > Yahoo! Groups SponsorADVERTISEMENT
                      >
                      > To unsubscribe from this group, send an email to:
                      > huntingtonsatrisk-unsubscribe@yahoogroups.com
                      >
                      >
                      >
                      > Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
                      >
                      >
                      >
                      >
                      >  Peace..Toni
                      >
                      >
                      > ---------------------------------
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                       Peace..Toni


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                    • Tara Bintliff
                      Hey everyone Just had a quick question. My grandmother seems to be passing out a lot.. mostly at the supermarket. Is this generally something that comes with
                      Message 10 of 13 , Dec 10, 2003
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                        Hey everyone

                        Just had a quick question…

                        My grandmother seems to be passing out a lot.. mostly at the supermarket…

                        Is this generally something that comes with hd?

                        She don’t tell the dr’s that shes got hd.. cause shes convinced she doesn’t.. but if anyone else has experienced this.. please let me know…

                         

                        Thank you

                         

                         

                        Tara

                      • thinkbadthoughts2002
                        ... NY border..I don t blame you about being scared to death..that is very brave of you to get tested..my daughter in law was tested before they did the 2
                        Message 11 of 13 , Dec 14, 2003
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                          --- In huntingtonsatrisk@yahoogroups.com, Toni Surman
                          <tonisurman@y...> wrote:
                          > Hi Kelly..Wethersfield is almost 2 hrs away from me ..I am on the
                          NY border..I don't blame you about being scared to death..that is
                          very brave of you to get tested..my daughter in law was tested before
                          they did the 2 invitro's but she did not want to know the results..so
                          the doctors know, but she doesn't!..anyway, keep in touch..Toni
                          >
                          > kelmcg@t... wrote:Hi Toni, I'm usually in Weathersfield. I don't
                          exactly know how far that is
                          > from Greenwich. I'm not either but I still would like to get
                          together with
                          > someone, it's alright. My mom has HD and I have one little brother
                          and one
                          > little sister who are also at risk. I turn 18 soon and I have
                          choosen to get
                          > tested and I'm scared to death. Kelly
                          >
                          hello i am new here and on the 12 of dec i went to the genetics nurse
                          and she sed i had signs i am only 16 and i am getin councilin in feb
                          2004 and i am getin the tezt early my dad has it i am terrified and
                          pray i dont have it!
                          >
                          >
                          >
                          >
                          >
                          >
                          > Quoting Toni Surman <tonisurman@y...>:
                          >
                          > > Hi Kelly..I'm in Greenwich...NY border..I'm not a very active
                          member in the
                          > > group..but I try to keep up with the posts..My DIL's family has
                          the HD
                          > > gene..her 2 sisters are in progressive stages..write back when
                          you have
                          > > time..thanks for caring..Toni
                          > >
                          > > kelmcg@t... wrote:I'm sorry to hear about the Invetro. I
                          hopeeverythig
                          > > works out with whatever
                          > > you try next. Where abouts do you live in CT. I live in MA and I
                          go down to
                          > > CT
                          > > all the time. I've been looking for someone to get together with.
                          If you
                          > > dont'
                          > > want to, it's ok.
                          > > Kelly
                          > >
                          > >
                          > >
                          > >
                          > >
                          > >
                          > > > Toni <tonisurman@y...> wrote:
                          > > > Hello all..it's that stranger Toni from Ct..DIL's second
                          attempt at
                          > > > invitro failed..they are researching amniosenthesis..hmmm..my
                          older
                          > > > son seems to think if fetus shows HD gene that means DIL
                          DEFINITELY
                          > > > HAS THE DISEASE..I am wondering if anyone knows if this is
                          true..she
                          > > > is VERY UPSET the invitro failed..and is not too receptive to
                          trying
                          > > > amnio..and also aborting fetus if it has the HD gene..I see a
                          little
                          > > > trouble in Paradise..meaning the marriage lately..thanks for
                          any help
                          > > > you can give me ..or even where to look to research this
                          > > > matter..thanx and Happy Holiday to all you fine people..Toni
                          > > >
                          > > >
                          > > > Yahoo! Groups SponsorADVERTISEMENT
                          > > >
                          > > > To unsubscribe from this group, send an email to:
                          > > > huntingtonsatrisk-unsubscribe@yahoogroups.com
                          > > >
                          > > >
                          > > >
                          > > > Your use of Yahoo! Groups is subject to the Yahoo! Terms of
                          Service.
                          > > >
                          > > > You must do the thing you think you can not do. Eleanor
                          Roosevelt
                          > > >
                          > > > ---------------------------------
                          > > > Do you Yahoo!?
                          > > > Free Pop-Up Blocker - Get it now
                          > >
                          > >
                          > >
                          > >
                          > > Yahoo! Groups SponsorADVERTISEMENT
                          > >
                          > > To unsubscribe from this group, send an email to:
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                          > >
                          > >
                          > >
                          > > Your use of Yahoo! Groups is subject to the Yahoo! Terms of
                          Service.
                          > >
                          > >
                          > >
                          > >
                          > > Peace..Toni
                          > >
                          > >
                          > > ---------------------------------
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                          >
                          >
                          >
                          >
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                          >
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                          Service.
                          >
                          >
                          >
                          >
                          > Peace..Toni
                          >
                          >
                          > ---------------------------------
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                        • thinkbadthoughts2002
                          ... know. ... no its not related to huntidon passing out is not one of the signs but tell her to get cheked out!
                          Message 12 of 13 , Dec 14, 2003
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                            --- In huntingtonsatrisk@yahoogroups.com, "Tara Bintliff" <tara@t...>
                            wrote:
                            > Hey everyone
                            > Just had a quick question.
                            > My grandmother seems to be passing out a lot.. mostly at the
                            > supermarket.
                            > Is this generally something that comes with hd?
                            > She don't tell the dr's that shes got hd.. cause shes convinced she
                            > doesn't.. but if anyone else has experienced this.. please let me
                            know.
                            >
                            > Thank you
                            >
                            >
                            > Tara

                            no its not related to huntidon passing out is not one of the signs
                            but tell her to get cheked out!
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