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  • cdc83
    I stop by this site often and check for new postings but there hasn t been any lately but I do see new members. Do hope all is going well with all those that
    Message 1 of 5 , Feb 17, 2002
      I stop by this site often and check for new postings but there
      hasn't been any lately but I do see new members. Do hope all is
      going well with all those that have been with this site for a while
      and encourage any and all new members to just jump right in and
      introduce themselves. Wonder why no one is posting lately, do we all
      just come to the point where we realize DI is something that is not
      going to go away and learn to live with it. I am aware that the DI
      will probably be with me the rest of my life but I have not given up
      on finding the cause of it. Back on the 25th of January I had a
      brain biopsy on the lesions found in my brain but much to my dismay
      the biopies have not revealed what caused the tumors to form. But I
      have not given up. Will share whatever information I aquire in the
      future. Good Luck to All. Mary Anne
    • colleen fadollone
      Hi Marryann Sorry to hear that you had to go through brain biopsy and still can t find why, It is still being researched and we will probably never find the
      Message 2 of 5 , Feb 17, 2002
        Hi Marryann

        Sorry to hear that you had to go through brain biopsy and still can't find why, It is still being
        researched and we will probably never find the reason in our lifetime, I have just learned to live
        with it but hope there is hope for the next generation.

        Colleen


        --- cdc83 <mac12@...> wrote:
        > I stop by this site often and check for new postings but there
        > hasn't been any lately but I do see new members. Do hope all is
        > going well with all those that have been with this site for a while
        > and encourage any and all new members to just jump right in and
        > introduce themselves. Wonder why no one is posting lately, do we all
        > just come to the point where we realize DI is something that is not
        > going to go away and learn to live with it. I am aware that the DI
        > will probably be with me the rest of my life but I have not given up
        > on finding the cause of it. Back on the 25th of January I had a
        > brain biopsy on the lesions found in my brain but much to my dismay
        > the biopies have not revealed what caused the tumors to form. But I
        > have not given up. Will share whatever information I aquire in the
        > future. Good Luck to All. Mary Anne
        >
        >


        __________________________________________________
        Do You Yahoo!?
        Yahoo! Sports - Coverage of the 2002 Olympic Games
        http://sports.yahoo.com
      • colleen fadollone
        ... __________________________________________________ Do You Yahoo!? Yahoo! Sports - Coverage of the 2002 Olympic Games http://sports.yahoo.com
        Message 3 of 5 , Feb 17, 2002
          --- colleen fadollone <aaa_colleen@...> wrote:
          > Hi Marryann
          >
          > Sorry to hear that you had to go through brain biopsy and still can't find why, It is still
          > being
          > researched and we will probably never find the reason in our lifetime, I have just learned to
          > live
          > with it but hope there is hope for the next generation.
          >
          > Colleen
          >
          >
          > --- cdc83 <mac12@...> wrote:
          > > I stop by this site often and check for new postings but there
          > > hasn't been any lately but I do see new members. Do hope all is
          > > going well with all those that have been with this site for a while
          > > and encourage any and all new members to just jump right in and
          > > introduce themselves. Wonder why no one is posting lately, do we all
          > > just come to the point where we realize DI is something that is not
          > > going to go away and learn to live with it. I am aware that the DI
          > > will probably be with me the rest of my life but I have not given up
          > > on finding the cause of it. Back on the 25th of January I had a
          > > brain biopsy on the lesions found in my brain but much to my dismay
          > > the biopies have not revealed what caused the tumors to form. But I
          > > have not given up. Will share whatever information I aquire in the
          > > future. Good Luck to All. Mary Anne
          > >
          > >
          >
          >
          > __________________________________________________
          > Do You Yahoo!?
          > Yahoo! Sports - Coverage of the 2002 Olympic Games
          > http://sports.yahoo.com
          >


          __________________________________________________
          Do You Yahoo!?
          Yahoo! Sports - Coverage of the 2002 Olympic Games
          http://sports.yahoo.com
        • Magneto9@aol.com
          Hi Mary Anne, what area of your brain has the lesions/tumors on it? My son has Langerhans Cell Histiocytosis which caused damage to his pituitary gland. He had
          Message 4 of 5 , Feb 17, 2002
            Hi Mary Anne,
            what area of your brain has the lesions/tumors on it? My son has Langerhans Cell Histiocytosis which caused damage to his pituitary gland. He had a biopsy of it when it was first discovered just to rule out cancer because they are similar in appearance. He is doing fine now with DDAVP in pill form.
            How is your recovery from surgery going? What did they biopsy find?

            Vicky
          • mskewlgal@aol.com
            Well, I think that I am one of those whom has just come to grips with the fact that I take DDAVP forever. I am just thankful that it exists! Meanwhile, I heard
            Message 5 of 5 , Feb 17, 2002
              Well, I think that I am one of those whom has just come to grips with the
              fact that I take DDAVP forever. I am just thankful that it exists!

              Meanwhile, I heard the other day that I am going to be the subject of a
              medical publication, that kinda touches on my Di and on a skin condition I
              have called Xanthoma Disseminatum (XD). They only have about 140 cases of it
              diagnoses since the 1840s, but if anyone else has XD and Di, or has had any
              form of lymphona with either, I'd be interested in hearing from them.

              Thanks,
              Steph
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