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Re: [diabetesinsipidus] 45 Years with CDI

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  • Lori Miles
    ... Hi, my name is Lori Miles. I am 38 years old. I was diagnosed with DI in 1978. I had a reocurring brain tumor, which was pressing on my pituitary gland &
    Message 1 of 4 , Mar 31, 2003
      on 3/30/03 7:51 PM, ninaclock at ninaclock@... wrote:

      > I'm a 52 yr. old female who has lived a full life despite having
      > CDI, which was diagnosed when I was seven years old. I had every
      > diagnosis under the sun that included epilipsy & brain tumor while
      > they tried to figure out what I had. It took six long misearable
      > months before they found a drug called pitressin tanate which was
      > given to me daily as an inection shot inter-muscular.
      >
      > I lived with the shots until I was 27, when I started developing
      > migraine headaches after every shot. The doctor tried me on diapid
      > which did the trick and was so much more convenient.
      >
      > I have had two beautiful children and four grandchildren who show no
      > syptoms of CDI. I am currently using ddavp 2X daily and have kept
      > my disease in cheque, with only one episode of having an imbalance
      > of electrolytes which caused me to have a couple siezures.
      >
      > For those parents with children my only advice is to let your child
      > self regulate their medication, let them lead normal lives and don't
      > keep them from doing activities that you think wouldn't be healthy
      > for them. Teach your child to listen to their body and they will
      > learn they have the power over the disease and not the disease
      > taking power over them.
      >
      >
      >
      > Community email addresses:
      > Post message: diabetesinsipidus@onelist.com
      > Subscribe: diabetesinsipidus-subscribe@onelist.com
      > Unsubscribe: diabetesinsipidus-unsubscribe@onelist.com
      > List owner: diabetesinsipidus-owner@onelist.com
      >
      > Shortcut URL to this page:
      > http://www.onelist.com/community/diabetesinsipidus
      >
      > Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
      >
      >
      Hi, my name is Lori Miles. I am 38 years old. I was diagnosed with DI
      in 1978. I had a reocurring brain tumor, which was pressing on my pituitary
      gland & right optic nerve. (Craniophyriginoma) My pituitary gland quit
      functioning. I don't know what kind of DI I have. Would you please explain
      them to me. Thanks!
    • K.A. Thompson
      ... with DI ... pituitary ... explain ... I m no expert, but I d say Central DI. Mine was also caused by a pituitary tumor... Luckily most of my pit gland
      Message 2 of 4 , Apr 1, 2003
        --- In diabetesinsipidus@yahoogroups.com, Lori Miles <msmillo@m...> wrote:
        >
        > Hi, my name is Lori Miles. I am 38 years old. I was diagnosed
        with DI
        > in 1978. I had a reocurring brain tumor, which was pressing on my
        pituitary
        > gland & right optic nerve. (Craniophyriginoma) My pituitary gland quit
        > functioning. I don't know what kind of DI I have. Would you please
        explain
        > them to me. Thanks!

        I'm no expert, but I'd say Central DI. Mine was also caused by a
        pituitary tumor... Luckily most of my pit gland functions, I'm only
        missing a few of the hormones it spits out and regulates.
      • ninaclock
        Hi Lori, I m no pro on diagnosis but it sounds like your condition is totally CDI. Mine was diagnosed at age 7 as idiopathic as it had no known cause. Years
        Message 3 of 4 , Apr 1, 2003
          Hi Lori,
          I'm no pro on diagnosis but it sounds like your condition is totally
          CDI. Mine was diagnosed at age 7 as idiopathic as it had no known
          cause.

          Years ago when doing net research on my condition I found Dr.
          Robertson and volunteered for a study he was conducting on gentic
          CDI. At that time he encouraged me to have an MRI to determine if I
          had a tumor that was causing the vasopressin to be blocked. My local
          endo Dr. disagreed that at this stage in my life and with 40 some
          years of having the disease under me that an MRI was even needed. I
          will tell you that it does bother me that I may have a tumor, but
          without any further symptoms can't justify an MRI. I don't suppose
          that having an HMO as my medical insurance provider has anything to
          do with it??? :)

          --- In diabetesinsipidus@yahoogroups.com, Lori Miles <msmillo@m...>
          wrote:
          > on 3/30/03 7:51 PM, ninaclock at ninaclock@y... wrote:
          >
          > > I'm a 52 yr. old female who has lived a full life despite having
          > > CDI, which was diagnosed when I was seven years old. I had every
          > > diagnosis under the sun that included epilipsy & brain tumor while
          > > they tried to figure out what I had. It took six long misearable
          > > months before they found a drug called pitressin tanate which was
          > > given to me daily as an inection shot inter-muscular.
          > >
          > > I lived with the shots until I was 27, when I started developing
          > > migraine headaches after every shot. The doctor tried me on
          diapid
          > > which did the trick and was so much more convenient.
          > >
          > > I have had two beautiful children and four grandchildren who show
          no
          > > syptoms of CDI. I am currently using ddavp 2X daily and have kept
          > > my disease in cheque, with only one episode of having an imbalance
          > > of electrolytes which caused me to have a couple siezures.
          > >
          > > For those parents with children my only advice is to let your
          child
          > > self regulate their medication, let them lead normal lives and
          don't
          > > keep them from doing activities that you think wouldn't be healthy
          > > for them. Teach your child to listen to their body and they will
          > > learn they have the power over the disease and not the disease
          > > taking power over them.
          > >
          > >
          > >
          > > Community email addresses:
          > > Post message: diabetesinsipidus@onelist.com
          > > Subscribe: diabetesinsipidus-subscribe@onelist.com
          > > Unsubscribe: diabetesinsipidus-unsubscribe@onelist.com
          > > List owner: diabetesinsipidus-owner@onelist.com
          > >
          > > Shortcut URL to this page:
          > > http://www.onelist.com/community/diabetesinsipidus
          > >
          > > Your use of Yahoo! Groups is subject to
          http://docs.yahoo.com/info/terms/
          > >
          > >
          > Hi, my name is Lori Miles. I am 38 years old. I was diagnosed
          with DI
          > in 1978. I had a reocurring brain tumor, which was pressing on my
          pituitary
          > gland & right optic nerve. (Craniophyriginoma) My pituitary gland
          quit
          > functioning. I don't know what kind of DI I have. Would you please
          explain
          > them to me. Thanks!
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