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Re: [diabetesinsipidus] Re: new member

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  • Chillin0016@cs.com
    Eric, I don t want to contradict you, as of course you know all about DI and have had it your whole life, but DDAVP is generally only effective in Central and
    Message 1 of 27 , Jun 4, 2004
      Eric, I don't want to contradict you, as of course you know all about DI and have had it your whole life, but DDAVP is generally only effective in Central and Gestagenic Diabetes Insipidus. Other medications are used to treat Nephrogenic DI (such as hydrochlorothiazide and indomethacin), and Primary Polydipsia (Dipsogenic DI) is almost never treatable with medication. And it sounds to me (from the extensive research I have done in the recent past, though in no way am I claiming myself to be an expert) that Emily has Primary Polydipsia.

      From what I've heard, she's had her symptoms for a very long time--before she even started the Prednisone or Advair--they only just recently became problematic. Knowing that her polydipsia causes her polyuria (and not the other way around) practically rules out both CDI and NDI; and she isn't pregnant (or so she hasn't claimed), so it wouldn't be GDI. That leaves only PP. In addition--and as you said--her urine is only clear when she drinks excessively; when she drinks less, her urine gets darker; that is cause to believe that the values of her urine osmolality fluctuate greatly depending upon how much she drinks. (Emily, don't you just love us talking about your urine? *friendly smile*) In both CDI and NDI, the kidneys pass large volumes of dilute urine, either because the hypothalamus secretes too little vasopressin, or because the kidneys cannot respond to the vasopressin secreted; in both cases, the patient's urine osmolality values are low regardless of how much they drink. This sends us again to the possible conclusion that Emily has Primary Polydipsia (Dipsogenic DI) as opposed to CDI or NDI.

      Now, more often than not, the cause of excessive thirst in PP is hypothalamic dysfunction. A brain scan would show any growths or malignancies on Emily's hypothalamus. Sometimes, however, the cause is ideopathic and cannot be determined from a brainscan or etiology (though in Emily's case, I'd say it be studied extensively to find the cause if an MRI shows up normal--but again: not an expert).

      And, I think I'm done speiling now. Emily, hope I helped. Eric, hope I didn't scare ya too much. heh.

      Jennifer e.h.

      In a message dated 5/30/2004 11:13:01 PM Central Daylight Time, emazzi@... writes:


      Emily,
      I know people can be tough and say the wrong things I have this complication and it has been for 48 years of it, no one understands, but the real truth is no one gives a damn, I beleive what you are saying is true, I am trying to help, I have worked as a Pharmacy Tech, also 8 years in a hospital, I can tell you that your Dr. does not have and idea on complications on medicine, the truth is they dont do much studying on meds, prednisone Hcl. Major side effects include, thirst, depression, I dont want to give you a hard time, but steroids are tough, I understand why you are taking it, but it can make you very thirsty, If you dont urinate for a couple of hours, it is ok that your urine is yellow, the fact that it is clear, well it should be, you are drinking a lot of water. Drs. dont have a grip on meds at all, do not let them BS you. You can look up meds in a PDR Book, they sure as hell dont know. I should say most of the Docs dont know, there is one out of a million that takes the time to study, I have met a few of that nature. Bottom line, I hope you do not have DI, If you do you can take DDAVP, but that goes with a whole bag full of complications as well, I do not mean to scare you. I will tell you like it is, Please stay in touch, I will help you the best that I can. Best of luck!!! Sincerely Eric


    • emazzi
      Emily, Have you had any back injuries, Have you had an experiences with chrioropractic care? 2 questions that nobody will ask, most important. As far as
      Message 2 of 27 , Jun 4, 2004
        Emily,
        Have you had any back injuries, Have you had an experiences with chrioropractic care?  2 questions that nobody will ask, most important. As far as diagnosis, there is no one answere, the common diagnosis that one might think they have figured out, might not be the same for you. Everybody has a body that functions, but not everyone body functions the same, what may be ok for you, may not be ok for your friend. In short, you can not rule out any possibility by what you have told us, people are trying to help, but the fact is what you have told us is to the best of your ability, but you have missed something along the way, or we may have missed something along the way, so I will tell you just because your uine. As far as Prednisone or Advair, the question that I have is have you increased dossage? As far as brain scans and all of that hogwash, it may be something simple that was overlooked, I would like to answer the questions that I asked in the beginning. There also is homopathic meds that will help in many ways. Eric
        ----- Original Message -----
        Sent: Friday, June 04, 2004 5:06 AM
        Subject: Re: [diabetesinsipidus] Re: new member

        Eric, I don't want to contradict you, as of course you know all about DI and have had it your whole life, but DDAVP is generally only effective in Central and Gestagenic Diabetes Insipidus. Other medications are used to treat Nephrogenic DI (such as hydrochlorothiazide and indomethacin), and Primary Polydipsia (Dipsogenic DI) is almost never treatable with medication. And it sounds to me (from the extensive research I have done in the recent past, though in no way am I claiming myself to be an expert) that Emily has Primary Polydipsia.

        From what I've heard, she's had her symptoms for a very long time--before she even started the Prednisone or Advair--they only just recently became problematic. Knowing that her polydipsia causes her polyuria (and not the other way around) practically rules out both CDI and NDI; and she isn't pregnant (or so she hasn't claimed), so it wouldn't be GDI. That leaves only PP. In addition--and as you said--her urine is only clear when she drinks excessively; when she drinks less, her urine gets darker; that is cause to believe that the values of her urine osmolality fluctuate greatly depending upon how much she drinks. (Emily, don't you just love us talking about your urine? *friendly smile*) In both CDI and NDI, the kidneys pass large volumes of dilute urine, either because the hypothalamus secretes too little vasopressin, or because the kidneys cannot respond to the vasopressin secreted; in both cases, the patient's urine osmolality values are low regardless of how much they drink. This sends us again to the possible conclusion that Emily has Primary Polydipsia (Dipsogenic DI) as opposed to CDI or NDI.

        Now, more often than not, the cause of excessive thirst in PP is hypothalamic dysfunction. A brain scan would show any growths or malignancies on Emily's hypothalamus. Sometimes, however, the cause is ideopathic and cannot be determined from a brainscan or etiology (though in Emily's case, I'd say it be studied extensively to find the cause if an MRI shows up normal--but again: not an expert).

        And, I think I'm done speiling now. Emily, hope I helped. Eric, hope I didn't scare ya too much. heh.

        Jennifer e.h.

        In a message dated 5/30/2004 11:13:01 PM Central Daylight Time, emazzi@... writes:


        Emily,
        I know people can be tough and say the wrong things I have this complication and it has been for 48 years of it, no one understands, but the real truth is no one gives a damn, I beleive what you are saying is true, I am trying to help, I have worked as a Pharmacy Tech, also 8 years in a hospital, I can tell you that your Dr. does not have and idea on complications on medicine, the truth is they dont do much studying on meds, prednisone Hcl. Major side effects include, thirst, depression, I dont want to give you a hard time, but steroids are tough, I understand why you are taking it, but it can make you very thirsty, If you dont urinate for a couple of hours, it is ok that your urine is yellow, the fact that it is clear, well it should be, you are drinking a lot of water. Drs. dont have a grip on meds at all, do not let them BS you. You can look up meds in a PDR Book, they sure as hell dont know. I should say most of the Docs dont know, there is one out of a million that takes the time to study, I have met a few of that nature. Bottom line, I hope you do not have DI, If you do you can take DDAVP, but that goes with a whole bag full of complications as well, I do not mean to scare you. I will tell you like it is, Please stay in touch, I will help you the best that I can. Best of luck!!! Sincerely Eric




        Community email addresses:
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      • Emily
        No, I have not had any injuries at all and I have never been to a chiropractor. emazzi wrote:Emily, Have you had any back injuries, Have
        Message 3 of 27 , Jun 4, 2004
          No, I have not had any injuries at all and I have never been to a chiropractor.

          emazzi <emazzi@...> wrote:
          Emily,
          Have you had any back injuries, Have you had an experiences with chrioropractic care?  2 questions that nobody will ask, most important. As far as diagnosis, there is no one answere, the common diagnosis that one might think they have figured out, might not be the same for you. Everybody has a body that functions, but not everyone body functions the same, what may be ok for you, may not be ok for your friend. In short, you can not rule out any possibility by what you have told us, people are trying to help, but the fact is what you have told us is to the best of your ability, but you have missed something along the way, or we may have missed something along the way, so I will tell you just because your uine. As far as Prednisone or Advair, the question that I have is have you increased dossage? As far as brain scans and all of that hogwash, it may be something simple that was overlooked, I would like to answer the questions that I asked in the beginning. There also is homopathic meds that will help in many ways. Eric
          ----- Original Message -----
          Sent: Friday, June 04, 2004 5:06 AM
          Subject: Re: [diabetesinsipidus] Re: new member

          Eric, I don't want to contradict you, as of course you know all about DI and have had it your whole life, but DDAVP is generally only effective in Central and Gestagenic Diabetes Insipidus. Other medications are used to treat Nephrogenic DI (such as hydrochlorothiazide and indomethacin), and Primary Polydipsia (Dipsogenic DI) is almost never treatable with medication. And it sounds to me (from the extensive research I have done in the recent past, though in no way am I claiming myself to be an expert) that Emily has Primary Polydipsia.

          From what I've heard, she's had her symptoms for a very long time--before she even started the Prednisone or Advair--they only just recently became problematic. Knowing that her polydipsia causes her polyuria (and not the other way around) practically rules out both CDI and NDI; and she isn't pregnant (or so she hasn't claimed), so it wouldn't be GDI. That leaves only PP. In addition--and as you said--her urine is only clear when she drinks excessively; when she drinks less, her urine gets darker; that is cause to believe that the values of her urine osmolality fluctuate greatly depending upon how much she drinks. (Emily, don't you just love us talking about your urine? *friendly smile*) In both CDI and NDI, the kidneys pass large volumes of dilute urine, either because the hypothalamus secretes too little vasopressin, or because the kidneys cannot respond to the vasopressin secreted; in both cases, the patient's urine osmolality values are low regardless of how much they drink. This sends us again to the possible conclusion that Emily has Primary Polydipsia (Dipsogenic DI) as opposed to CDI or NDI.

          Now, more often than not, the cause of excessive thirst in PP is hypothalamic dysfunction. A brain scan would show any growths or malignancies on Emily's hypothalamus. Sometimes, however, the cause is ideopathic and cannot be determined from a brainscan or etiology (though in Emily's case, I'd say it be studied extensively to find the cause if an MRI shows up normal--but again: not an expert).

          And, I think I'm done speiling now. Emily, hope I helped. Eric, hope I didn't scare ya too much. heh.

          Jennifer e.h.

          In a message dated 5/30/2004 11:13:01 PM Central Daylight Time, emazzi@... writes:


          Emily,
          I know people can be tough and say the wrong things I have this complication and it has been for 48 years of it, no one understands, but the real truth is no one gives a damn, I beleive what you are saying is true, I am trying to help, I have worked as a Pharmacy Tech, also 8 years in a hospital, I can tell you that your Dr. does not have and idea on complications on medicine, the truth is they dont do much studying on meds, prednisone Hcl. Major side effects include, thirst, depression, I dont want to give you a hard time, but steroids are tough, I understand why you are taking it, but it can make you very thirsty, If you dont urinate for a couple of hours, it is ok that your urine is yellow, the fact that it is clear, well it should be, you are drinking a lot of water. Drs. dont have a grip on meds at all, do not let them BS you. You can look up meds in a PDR Book, they sure as hell dont know. I should say most of the Docs dont know, there is one out of a million that takes the time to study, I have met a few of that nature. Bottom line, I hope you do not have DI, If you do you can take DDAVP, but that goes with a whole bag full of complications as well, I do not mean to scare you. I will tell you like it is, Please stay in touch, I will help you the best that I can. Best of luck!!! Sincerely Eric




          Community email addresses:
            Post message: diabetesinsipidus@onelist.com
            Subscribe:    diabetesinsipidus-subscribe@onelist.com
            Unsubscribe:  diabetesinsipidus-unsubscribe@onelist.com
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          Community email addresses:
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        • Jessica Stearns
          Dear Emily, Please hang in there. Most everyone here has had a difficult time getting a diagnosis. I hope your endocrinologist will be able to help you. I
          Message 4 of 27 , Jun 4, 2004
            Dear Emily,
            Please hang in there. Most everyone here has had a difficult time
            getting a diagnosis. I hope your endocrinologist will be able to help
            you. I tried the same thing whenever i went to the movies. I would
            end up with a pounding headache in the back of my head. It felt as
            though i had a hangover. Sometimes these headaches would last for
            days. Good luck with your appointment and if you end up getting an
            answer you don't like don't hesitate to find another doctor you like
            better
            jessie.
            On Jun 4, 2004, at 10:32 PM, Emily wrote:

            > No, I have not had any injuries at all and I have never been to a
            > chiropractor.
            >
            > emazzi <emazzi@...> wrote:
            > Emily,
            > Have you had any back injuries, Have you had an experiences with
            > chrioropractic care?  2 questions that nobody will ask, most
            > important. As far as diagnosis, there is no one answere, the common
            > diagnosis that one might think they have figured out, might not be the
            > same for you. Everybody has a body that functions, but not everyone
            > body functions the same, what may be ok for you, may not be ok for
            > your friend. In short, you can not rule out any possibility by what
            > you have told us, people are trying to help, but the fact is what you
            > have told us is to the best of your ability, but you have missed
            > something along the way, or we may have missed something along the
            > way, so I will tell you just because your uine. As far as Prednisone
            > or Advair, the question that I have is have you increased dossage? As
            > far as brain scans and all of that hogwash, it may be something simple
            > that was overlooked, I would like to answer the questions that I asked
            > in the beginning. There also is homopathic meds that will help in many
            > ways. Eric
            > ----- Original Message -----
            > From: Chillin0016@...
            > To: diabetesinsipidus@yahoogroups.com
            > Sent: Friday, June 04, 2004 5:06 AM
            > Subject: Re: [diabetesinsipidus] Re: new member
            >
            > Eric, I don't want to contradict you, as of course you know all about
            > DI and have had it your whole life, but DDAVP is generally only
            > effective in Central and Gestagenic Diabetes Insipidus. Other
            > medications are used to treat Nephrogenic DI (such as
            > hydrochlorothiazide and indomethacin), and Primary Polydipsia
            > (Dipsogenic DI) is almost never treatable with medication. And it
            > sounds to me (from the extensive research I have done in the recent
            > past, though in no way am I claiming myself to be an expert) that
            > Emily has Primary Polydipsia.
            >
            > From what I've heard, she's had her symptoms for a very long
            > time--before she even started the Prednisone or Advair--they only just
            > recently became problematic. Knowing that her polydipsia causes her
            > polyuria (and not the other way around) practically rules out both CDI
            > and NDI; and she isn't pregnant (or so she hasn't claimed), so it
            > wouldn't be GDI. That leaves only PP. In addition--and as you
            > said--her urine is only clear when she drinks excessively; when she
            > drinks less, her urine gets darker; that is cause to believe that the
            > values of her urine osmolality fluctuate greatly depending upon how
            > much she drinks. (Emily, don't you just love us talking about your
            > urine? *friendly smile*) In both CDI and NDI, the kidneys pass large
            > volumes of dilute urine, either because the hypothalamus secretes too
            > little vasopressin, or because the kidneys cannot respond to the
            > vasopressin secreted; in both cases, the patient's urine osmolality
            > values are low regardless of how much they drink. This sends us again
            > to the possible conclusion that Emily has Primary Polydipsia
            > (Dipsogenic DI) as opposed to CDI or NDI.
            >
            > Now, more often than not, the cause of excessive thirst in PP is
            > hypothalamic dysfunction. A brain scan would show any growths or
            > malignancies on Emily's hypothalamus. Sometimes, however, the cause is
            > ideopathic and cannot be determined from a brainscan or etiology
            > (though in Emily's case, I'd say it be studied extensively to find the
            > cause if an MRI shows up normal--but again: not an expert).
            >
            > And, I think I'm done speiling now. Emily, hope I helped. Eric, hope
            > I didn't scare ya too much. heh.
            >
            > Jennifer e.h.
            >
            > In a message dated 5/30/2004 11:13:01 PM Central Daylight Time,
            > emazzi@... writes:
            >
            >
            >
            > Emily,
            > I know people can be tough and say the wrong things I have this
            > complication and it has been for 48 years of it, no one understands,
            > but the real truth is no one gives a damn, I beleive what you are
            > saying is true, I am trying to help, I have worked as a Pharmacy Tech,
            > also 8 years in a hospital, I can tell you that your Dr. does not have
            > and idea on complications on medicine, the truth is they dont do much
            > studying on meds, prednisone Hcl. Major side effects include, thirst,
            > depression, I dont want to give you a hard time, but steroids are
            > tough, I understand why you are taking it, but it can make you very
            > thirsty, If you dont urinate for a couple of hours, it is ok that your
            > urine is yellow, the fact that it is clear, well it should be, you are
            > drinking a lot of water. Drs. dont have a grip on meds at all, do not
            > let them BS you. You can look up meds in a PDR Book, they sure as hell
            > dont know. I should say most of the Docs dont know, there is one out
            > of a million that takes the time to study, I have met a few of that
            > nature. Bottom line, I hope you do not have DI, If you do you can take
            > DDAVP, but that goes with a whole bag full of complications as well, I
            > do not mean to scare you. I will tell you like it is, Please stay in
            > touch, I will help you the best that I can. Best of luck!!! Sincerely
            > Eric
            >
            >
            >
            >
            > Community email addresses:
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            >
            >
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            >
            >
            >
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          • Stephanie
            Hi Emily! Welcome to the group! There are a lot of supportive people here! Have you had your sodium checked? Diabetes Insipidus is also know as water
            Message 5 of 27 , Jun 6, 2004
              Hi Emily!
              Welcome to the group! There are a lot of supportive people
              here! Have you had your sodium checked? Diabetes Insipidus is also
              know as water diabetes, and is affected by your sodium level. Just
              thought I'd mention that. Just one other thing to take into
              consideration. Good Luck!
              Stephanie
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