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Re: [huntington's at risk] Worried

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  • Amanda
    ... you find a doctor that is familiar with HD. I know my primary doctor is really useless and I really don t even know how to began looking for one. Thanks,
    Message 1 of 8 , Feb 1, 2009
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      --- In huntingtonsatrisk@yahoogroups.com, M <rtn4jr8@...> wrote:
      >Thanks to everyone for listening and for the good advice. How do
      you find a doctor that is familiar with HD. I know my primary
      doctor is really useless and I really don't even know how to began
      looking for one.
      Thanks,
      Amanda


      > Hi Amanda,
      >  
      > I agree with Cindy - sounds like normal day things that happen. 
      I've been exhibiting some of the same things you've described and I
      tested negative for the gene 1 1/2 years ago and have told friends
      that had I not tested negative then I would be worried that I'm
      showing symptoms.  I think that stress and the hustle of everyday
      life will cause you to be forgetful from time to time.  Our minds
      are powerful tools and we can convince ourselves of things that
      aren't necessarily true.  If you're really worried then I would go
      to a doctor who is familiar with HD to talk about your concerns. 
      >  
      > None of us are guaranteed a tomorrow - so live your life every day
      as if it were your last and enjoy each moment.  :)
      >  
      > Best wishes always,
      > Melanie
      >  
      >  
      >  
      >  --- On Sat, 1/31/09, Cindy Diogo <cindy_diogo@...> wrote:
      >
      > From: Cindy Diogo <cindy_diogo@...>
      > Subject: Re: [huntington's at risk] Worried
      > To: huntingtonsatrisk@yahoogroups.com
      > Date: Saturday, January 31, 2009, 6:50 AM
      >
      >
      >
      >
      >
      >
      >
      >
      >
      >
      >
      > Hi Amanda,
      > Stop thinking about normal everyday things that happen.  I do the
      same thing, sometimes words come out wrong, I forget something I was
      supposed to do.  I too am in school, I work full time, and teach
      part time at a community college.
      > I admire you for going to get tested, it is a feat not to be taken
      lightly to say the least. I was not brave enough to do it until last
      spring..... I was 49 when I finally got up the courage to do it.....
      but I have to tell you...... I tested negative.
      > I only respond because I do the same things you are ...but do not
      carry the gene.  Before I was tested, I used to trip or fall on
      occassion... . stumble with words, or not be able to think of the
      correct word to use....... I still do it...but my CAG repeats were
      very low and I know I will not develop HD..... yes, I am happy but I
      still struggle with guilt because my little sister, age 42 is
      positive and is symptomatic.
      > Live your life..... keep stress at bay as best you can.... LIVE
      >  
      > Cindy
      >
      > --- On Sat, 1/31/09, Amanda <EMTChic3@msn. com> wrote:
      >
      > From: Amanda <EMTChic3@msn. com>
      > Subject: [huntington' s at risk] Worried
      > To: huntingtonsatrisk@ yahoogroups. com
      > Date: Saturday, January 31, 2009, 1:07 AM
      >
      >
      >
      >
      > My name is Amanda I'm 25 years old and it's been a while since I
      > have posted anything and really it's been a while since I have
      read
      > anything. It's much easier to forget and pretend I don't need
      > places like this. I tested positive three years ago, I wasn't
      > having symptoms I was just at risk and wanted to know. I think it
      > was the right decision but I do go back and forth about it
      > sometimes. I think life would be so much easier if I didn't know.
      > But I do know and sometimes I think I'm being paranoid when I
      notice
      > things about myself. For the past few months I have been forgeting
      > things. I get my words all jumbled and just plane forget things.
      > I'll go to talk and some of the words don't come out right and I
      > just blame being in a hurry or talking to fast but it seems to
      > happen all the time. I don't forget anything major but I'm still
      > worried. I am in school and I don't have an issue remembering what
      > I'm taught and I'm doing well. My life is finally on track and I
      > just don't know if these are symptoms or I'm just talking too
      fast.
      > I know those are not normal early symptoms but still can't help
      but
      > loose sleep over it. If anyone has any advice I would really
      > appriciate it.
      > Thanks,
      > Amanda
      >
    • M
      Where do you live?  I d check the HD website to see if there are any doctors in your area and/or see if anyone here knows of a doctor in your area.  It is
      Message 2 of 8 , Feb 1, 2009
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        Where do you live?  I'd check the HD website to see if there are any doctors in your area and/or see if anyone here knows of a doctor in your area.  It is difficult to find a doctor who if familiar with HD, especially depending on where you live.  I know it's been tough finding one for my Mom but we were finally able to do it and he's willing to research HD to learn more. 
         
        I'm always here if you need someone to listen to you, need a shoulder, or anything.  Remember that you are never alone and there are people who understand the struggles of dealing with HD.  Never lose hope as there are wonderful things happening with research. 
         
        Best wishes always,
        Melanie

        --- On Sun, 2/1/09, Amanda <EMTChic3@...> wrote:
        From: Amanda <EMTChic3@...>
        Subject: Re: [huntington's at risk] Worried
        To: huntingtonsatrisk@yahoogroups.com
        Date: Sunday, February 1, 2009, 1:36 AM

        --- In huntingtonsatrisk@ yahoogroups. com, M <rtn4jr8@... > wrote:
        >Thanks to everyone for listening and for the good advice. How do
        you find a doctor that is familiar with HD. I know my primary
        doctor is really useless and I really don't even know how to began
        looking for one.
        Thanks,
        Amanda

        > Hi Amanda,
        >  
        > I agree with Cindy - sounds like normal day things that happen. 
        I've been exhibiting some of the same things you've described and I
        tested negative for the gene 1 1/2 years ago and have told friends
        that had I not tested negative then I would be worried that I'm
        showing symptoms.  I think that stress and the hustle of everyday
        life will cause you to be forgetful from time to time.  Our minds
        are powerful tools and we can convince ourselves of things that
        aren't necessarily true.  If you're really worried then I would go
        to a doctor who is familiar with HD to talk about your concerns. 
        >  
        > None of us are guaranteed a tomorrow - so live your life every day
        as if it were your last and enjoy each moment.  :)
        >  
        > Best wishes always,
        > Melanie
        >  
        >  
        >  
        >  --- On Sat, 1/31/09, Cindy Diogo <cindy_diogo@ ...> wrote:
        >
        > From: Cindy Diogo <cindy_diogo@ ...>
        > Subject: Re: [huntington' s at risk] Worried
        > To: huntingtonsatrisk@ yahoogroups. com
        > Date: Saturday, January 31, 2009, 6:50 AM
        >
        >
        >
        >
        >
        >
        >
        >
        >
        >
        >
        > Hi Amanda,
        > Stop thinking about normal everyday things that happen.  I do the
        same thing, sometimes words come out wrong, I forget something I was
        supposed to do.  I too am in school, I work full time, and teach
        part time at a community college.
        > I admire you for going to get tested, it is a feat not to be taken
        lightly to say the least. I was not brave enough to do it until last
        spring..... I was 49 when I finally got up the courage to do it.....
        but I have to tell you...... I tested negative.
        > I only respond because I do the same things you are ...but do not
        carry the gene.  Before I was tested, I used to trip or fall on
        occassion... . stumble with words, or not be able to think of the
        correct word to use....... I still do it...but my CAG repeats were
        very low and I know I will not develop HD..... yes, I am happy but I
        still struggle with guilt because my little sister, age 42 is
        positive and is symptomatic.
        > Live your life..... keep stress at bay as best you can.... LIVE
        >  
        > Cindy
        >
        > --- On Sat, 1/31/09, Amanda <EMTChic3@msn. com> wrote:
        >
        > From: Amanda <EMTChic3@msn. com>
        > Subject: [huntington' s at risk] Worried
        > To: huntingtonsatrisk@ yahoogroups. com
        > Date: Saturday, January 31, 2009, 1:07 AM
        >
        >
        >
        >
        > My name is Amanda I'm 25 years old and it's been a while since I
        > have posted anything and really it's been a while since I have
        read
        > anything. It's much easier to forget and pretend I don't need
        > places like this. I tested positive three years ago, I wasn't
        > having symptoms I was just at risk and wanted to know. I think it
        > was the right decision but I do go back and forth about it
        > sometimes. I think life would be so much easier if I didn't know.
        > But I do know and sometimes I think I'm being paranoid when I
        notice
        > things about myself. For the past few months I have been forgeting
        > things. I get my words all jumbled and just plane forget things.
        > I'll go to talk and some of the words don't come out right and I
        > just blame being in a hurry or talking to fast but it seems to
        > happen all the time. I don't forget anything major but I'm still
        > worried. I am in school and I don't have an issue remembering what
        > I'm taught and I'm doing well. My life is finally on track and I
        > just don't know if these are symptoms or I'm just talking too
        fast.
        > I know those are not normal early symptoms but still can't help
        but
        > loose sleep over it. If anyone has any advice I would really
        > appriciate it.
        > Thanks,
        > Amanda
        >


      • Cindy Diogo
        Amanda, Where do you live?  The network here is so huge, someone may be close by geographically and help you cut to the chase so to speak.  New Jersey has
        Message 3 of 8 , Feb 1, 2009
        • 0 Attachment
          Amanda,
          Where do you live?  The network here is so huge, someone may be close by geographically and help you "cut to the chase" so to speak.  New Jersey has great resources and networks for HD patients. I also personally know a physician in Philadelphia who has many HD patients.
          If you can tell me where you live, I can always ask her for a referral.  The network of HD saavy docs is small.... she may be able to help.
          Cindy

          --- On Sun, 2/1/09, Amanda <EMTChic3@...> wrote:
          From: Amanda <EMTChic3@...>
          Subject: Re: [huntington's at risk] Worried
          To: huntingtonsatrisk@yahoogroups.com
          Date: Sunday, February 1, 2009, 3:36 AM

          --- In huntingtonsatrisk@ yahoogroups. com, M <rtn4jr8@... > wrote:
          >Thanks to everyone for listening and for the good advice. How do
          you find a doctor that is familiar with HD. I know my primary
          doctor is really useless and I really don't even know how to began
          looking for one.
          Thanks,
          Amanda

          > Hi Amanda,
          >  
          > I agree with Cindy - sounds like normal day things that happen. 
          I've been exhibiting some of the same things you've described and I
          tested negative for the gene 1 1/2 years ago and have told friends
          that had I not tested negative then I would be worried that I'm
          showing symptoms.  I think that stress and the hustle of everyday
          life will cause you to be forgetful from time to time.  Our minds
          are powerful tools and we can convince ourselves of things that
          aren't necessarily true.  If you're really worried then I would go
          to a doctor who is familiar with HD to talk about your concerns. 
          >  
          > None of us are guaranteed a tomorrow - so live your life every day
          as if it were your last and enjoy each moment.  :)
          >  
          > Best wishes always,
          > Melanie
          >  
          >  
          >  
          >  --- On Sat, 1/31/09, Cindy Diogo <cindy_diogo@ ...> wrote:
          >
          > From: Cindy Diogo <cindy_diogo@ ...>
          > Subject: Re: [huntington' s at risk] Worried
          > To: huntingtonsatrisk@ yahoogroups. com
          > Date: Saturday, January 31, 2009, 6:50 AM
          >
          >
          >
          >
          >
          >
          >
          >
          >
          >
          >
          > Hi Amanda,
          > Stop thinking about normal everyday things that happen.  I do the
          same thing, sometimes words come out wrong, I forget something I was
          supposed to do.  I too am in school, I work full time, and teach
          part time at a community college.
          > I admire you for going to get tested, it is a feat not to be taken
          lightly to say the least. I was not brave enough to do it until last
          spring..... I was 49 when I finally got up the courage to do it.....
          but I have to tell you...... I tested negative.
          > I only respond because I do the same things you are ...but do not
          carry the gene.  Before I was tested, I used to trip or fall on
          occassion... . stumble with words, or not be able to think of the
          correct word to use....... I still do it...but my CAG repeats were
          very low and I know I will not develop HD..... yes, I am happy but I
          still struggle with guilt because my little sister, age 42 is
          positive and is symptomatic.
          > Live your life..... keep stress at bay as best you can.... LIVE
          >  
          > Cindy
          >
          > --- On Sat, 1/31/09, Amanda <EMTChic3@msn. com> wrote:
          >
          > From: Amanda <EMTChic3@msn. com>
          > Subject: [huntington' s at risk] Worried
          > To: huntingtonsatrisk@ yahoogroups. com
          > Date: Saturday, January 31, 2009, 1:07 AM
          >
          >
          >
          >
          > My name is Amanda I'm 25 years old and it's been a while since I
          > have posted anything and really it's been a while since I have
          read
          > anything. It's much easier to forget and pretend I don't need
          > places like this. I tested positive three years ago, I wasn't
          > having symptoms I was just at risk and wanted to know. I think it
          > was the right decision but I do go back and forth about it
          > sometimes. I think life would be so much easier if I didn't know.
          > But I do know and sometimes I think I'm being paranoid when I
          notice
          > things about myself. For the past few months I have been forgeting
          > things. I get my words all jumbled and just plane forget things.
          > I'll go to talk and some of the words don't come out right and I
          > just blame being in a hurry or talking to fast but it seems to
          > happen all the time. I don't forget anything major but I'm still
          > worried. I am in school and I don't have an issue remembering what
          > I'm taught and I'm doing well. My life is finally on track and I
          > just don't know if these are symptoms or I'm just talking too
          fast.
          > I know those are not normal early symptoms but still can't help
          but
          > loose sleep over it. If anyone has any advice I would really
          > appriciate it.
          > Thanks,
          > Amanda
          >


        • Toni
          ... notice ... fast. ... Hi Amanda..if your area is anything like mine you can call your local hospital and they should have a physician s reference guide and
          Message 4 of 8 , Feb 2, 2009
          • 0 Attachment
            --- In huntingtonsatrisk@yahoogroups.com, "Amanda" <EMTChic3@...>
            wrote:
            >
            > My name is Amanda I'm 25 years old and it's been a while since I
            > have posted anything and really it's been a while since I have read
            > anything. It's much easier to forget and pretend I don't need
            > places like this. I tested positive three years ago, I wasn't
            > having symptoms I was just at risk and wanted to know. I think it
            > was the right decision but I do go back and forth about it
            > sometimes. I think life would be so much easier if I didn't know.
            > But I do know and sometimes I think I'm being paranoid when I
            notice
            > things about myself. For the past few months I have been forgeting
            > things. I get my words all jumbled and just plane forget things.
            > I'll go to talk and some of the words don't come out right and I
            > just blame being in a hurry or talking to fast but it seems to
            > happen all the time. I don't forget anything major but I'm still
            > worried. I am in school and I don't have an issue remembering what
            > I'm taught and I'm doing well. My life is finally on track and I
            > just don't know if these are symptoms or I'm just talking too
            fast.
            > I know those are not normal early symptoms but still can't help but
            > loose sleep over it. If anyone has any advice I would really
            > appriciate it.
            > Thanks,
            > Amanda
            >
            Hi Amanda..if your area is anything like mine you can call your local
            hospital and they should have a physician's reference guide and will
            be able to point you in the right direction for a doctor..I know how
            you feel..my DIL has had the same GP since she was little and that
            doctor is useless when it comes to her HD problems..good luck..Toni
            in CT
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