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  • marcelo cassano
    hi do anyone in the group lives in New York,thank you. Cobertura especial de la Copa Mundial de la FIFA Corea-Japón 2002, sólo en Yahoo! Deportes:
    Message 1 of 13 , Jul 1, 2002
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      hi do anyone in the group lives in New York,thank you.

      Cobertura especial de la Copa Mundial de la FIFA Corea-Japón 2002, sólo en Yahoo! Deportes:
      http://ar.sports.yahoo.com/fifaworldcup/
    • Carolle Cox
      I m new here. I ve had DI the past three years, but I guess it s time to admit it s not transient. Stormy
      Message 2 of 13 , Jul 11, 2008
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        I'm new here. I've had DI the past three years, but I guess it's time
        to admit it's not transient.

        Stormy
      • gafgarion_21
        Hi! Stormy, I m Earl, though I ve been a member for a long time. I haven t been really active due to my job. I m a DI patient too. Mine was due to a small
        Message 3 of 13 , Jul 14, 2008
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          Hi! Stormy, I'm Earl, though I've been a member for a long time. I
          haven't been really active due to my job. I'm a DI patient too. Mine
          was due to a small tumor somewhere in beween my pituitary glands....
          How 'bout you??

          Spookd
        • Carolle
          Hi! Mine was also caused, most likely, by a tumor. I had a growth-hormone producing tumor in 1989. A year or so later, I developed meningitis from a leak that
          Message 4 of 13 , Jul 15, 2008
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            Hi! 
             
            Mine was also caused, most likely, by a tumor.  I had a growth-hormone producing tumor in 1989. A year or so later, I developed meningitis from a leak that no one suspected  And then about 2 years ago, I developed another tumor in/on/with what was left of my pituitary gland.  THAT one brought the uncontrollable thirst, the needing to get up at night to use the bathroom, etc.  The tumor raised my IGF to something like double normal, so the "official" opinion is that it was a regrowth of the first one, although the symptoms were entirely different.
             
            What I know now is I probably had it for a year or so before anyone noticed.  I bought bigger and bigger insulated cups. Finally bought a 1/2 gallon one, but it was too heavy to carry around when full. Post-op, I bought a more normal looking cup, but have had to return to the Bubba-cup.  Funny thing is that when I get up at night, my dogs are already heading downstairs to be let out - even if it is pitch dark out! 
             
            I've read in the archives that some of you are on a desmopressin nasal spray. How does this work? Why would one choose pills over spray or the other way round? 
             
            I've also read that some of you have had this condition for decades - what a joy to know DI isn't a killer!
             
            Just stumped my whole class! It's a Public Health class, and we were talking about Diabetes. Everyone seemed to be very 'up' on Type 1, Type 2, and Gestational Diabetes.   When I informed them that there are 4 more "Types" it caused quite an uproar! I sent them to the DI website for more information. So now 16 more people know what DI is...
             
            yours,
            Stormy
          • stephanie reed
            Carolle, I have had DI for 33 years and a cause was never found.  I control it best with DDAVP using the rhinal tube and snort it (sounds terrible) thru my
            Message 5 of 13 , Jul 15, 2008
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              Carolle,

              I have had DI for 33 years and a cause was never found.  I control it best with DDAVP using the rhinal tube and snort it (sounds terrible) thru my nasal passages to get to the blood stream quicker.  I have the pills as well to use when I travel.  I t is more convenient,but it doesn't seem as effective as the liquid.

              I will pray for your symptoms to improve and you will find what suites your needs best.

              Stephanie

              --- On Tue, 7/15/08, Carolle <chinrescue@...> wrote:

              From: Carolle <chinrescue@...>
              Subject: [diabetesinsipidus] Re: Hi
              To: diabetesinsipidus@yahoogroups.com
              Date: Tuesday, July 15, 2008, 1:03 PM

              Hi! 
               
              Mine was also caused, most likely, by a tumor.  I had a growth-hormone producing tumor in 1989. A year or so later, I developed meningitis from a leak that no one suspected  And then about 2 years ago, I developed another tumor in/on/with what was left of my pituitary gland.  THAT one brought the uncontrollable thirst, the needing to get up at night to use the bathroom, etc.  The tumor raised my IGF to something like double normal, so the "official" opinion is that it was a regrowth of the first one, although the symptoms were entirely different.
               
              What I know now is I probably had it for a year or so before anyone noticed.  I bought bigger and bigger insulated cups. Finally bought a 1/2 gallon one, but it was too heavy to carry around when full. Post-op, I bought a more normal looking cup, but have had to return to the Bubba-cup.  Funny thing is that when I get up at night, my dogs are already heading downstairs to be let out - even if it is pitch dark out! 
               
              I've read in the archives that some of you are on a desmopressin nasal spray. How does this work? Why would one choose pills over spray or the other way round? 
               
              I've also read that some of you have had this condition for decades - what a joy to know DI isn't a killer!
               
              Just stumped my whole class! It's a Public Health class, and we were talking about Diabetes. Everyone seemed to be very 'up' on Type 1, Type 2, and Gestational Diabetes.   When I informed them that there are 4 more "Types" it caused quite an uproar! I sent them to the DI website for more information. So now 16 more people know what DI is...
               
              yours,
              Stormy

            • mskewlgal@aol.com
              Stephanie that uses rhinal tube, When I first had DDAVP, I used the rhinal tube. Then, I finally was offered the one that works more like a bottle of afrin,
              Message 6 of 13 , Jul 15, 2008
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                Stephanie that uses rhinal tube,

                When I first had DDAVP, I used the rhinal tube. Then, I finally was offered the one that works more like a bottle of afrin, and I wonder why ANYONE would bother with the rhinal anymore! You might want to ask your doc about it. And yes, I know some of you that have to give it to kids, like to be able to measure, so I get it for that.....

                The other Stephanie : )



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              • Earl Carlo Lazaro
                ... From: Carolle To: diabetesinsipidus@yahoogroups.com Sent: Tuesday, July 15, 2008 7:03:36 PM Subject: [diabetesinsipidus] Re: Hi
                Message 7 of 13 , Jul 15, 2008
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                  ----- Original Message ----
                  From: Carolle <chinrescue@...>
                  To: diabetesinsipidus@yahoogroups.com
                  Sent: Tuesday, July 15, 2008 7:03:36 PM
                  Subject: [diabetesinsipidus] Re: Hi
                  HI!!!
                   
                                      It's really nice to hear from you. By the way, I had DI since birth. And my 3 months premature birth caused this and I'm 24 now. I guess from your stories, I guess I a little luckier. I only had one tumor, the one in my pituitary glands upto now. But the fact is that life in the Philippines isn't easy. And that maintainance for DI doesn't come cheap. You guys said about the spray, the pills and stuff. But I haven't taken at least one of them. The only thing that I remembered that I took is what was called "diabenese" to control my frequent urination but as a side effect, my blood sugar count drops fast so I should be full before I take the drug. But now. I'm not taking any medications and checkups. It's just like I've adjusted to DI. I had a little control over my urinating problems. I could withstand upto 2 to 3 hrs w/o taking a toilet trip and drinking. But the problem is that I remain physically weak than those any around me. My late doctor said it is about my electrolytes. I don't really understand that part. But through my work now, I'm investing for an MRI checkup and anything necessary. Hoping for any improvement on my health. Funny thing is that my mom said I inherited this from my grandmother. I said to myself, "there's many things to inherit from your parents or relatives like wealth but why this disease?".

                • Carolle
                  Jeepers, I haven t heard of DI being inherited! It probably would have something to do with an abnormality in either your pituitary or hypocampus (according
                  Message 8 of 13 , Jul 16, 2008
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                    Jeepers, I haven't heard of DI being inherited!  It probably would have something to do with an abnormality in either your pituitary or hypocampus (according to all this reading I've been doing).  I think an MRI, if you can afford it, will give you some solid answers on that.  I understand 'just controlling it' - I did that without really noticing it until my neurosurgeon asked if I really NEEDED that huge cup of water all the time.  I just stared at him. It didn't seem abnormal to me (especially after the previous 17 years!), and I had two children, so was very familiar with toddler potty training and the result of knowing where every single rest room was anywhere!  It's just a 'mommy thing' I guess.  The DDAVP does make it a little easier.  I confess, when it wears off early, which it does sometimes, I get a bit cranky about it.  Golly, I've gotten used to not having to urinate every 2 hours or less, and it's really frustrating when it comes back!
                     
                    I think I'm also dealing with a cocktail of drugs for the rest of my condition that may be making this DI thing harder. My blood pressure stuff, for example, can cause dry mouth.  How do you tell dry mouth from thirsty? I seem to be sipping at the water most of the day, and it's just got to have ice in it or I'm not happy, either. Then sometimes I drink a whole glass down without stopping, and I'm reaching to refill the glass when I realize what I'm doing.  That's a lot of water...
                     
                    I'm intrigued by the different nasal formulas. I'm sure they'd work faster, but do they last as long? Is there some distinctive thing that tells which is better for a person? I'm happy tossing pills down - I think I have about 15 prescriptions right now - but I want to make sure I understand the condition and that I'm doing the right thing, the right way round, to control it.
                     
                    You have already given me a lot to think about, and a goodly measure of comfort.
                     
                    thanks,
                    Stormy
                  • SarahJMcEvoy@aol.com
                    Hi Stormy Believe me after having DI for 38 years the spray is far better than the tablet. I found the tablet only working for an hour or if i was lucky two.
                    Message 9 of 13 , Jul 17, 2008
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                      Hi Stormy
                       
                      Believe me after having DI for 38 years the spray is far better than the tablet.  I found the tablet only working for an hour or if i was lucky two.  However if i drank after taking the tablet it didnt work at all. 
                       
                      The spray in my opinion is the better option, though i have experienced taking too much and all my hormones going crazy and soduim levels  decreasing.  After haveing an MRI i was advised to mix and match the tablet and spray during the day.  I think i have more control over my illness and i can go neary 6 hours during the day without a bathroom stop and all night not getting up once.  I am very careful in my fluid intake as i find the more fluid you drink even after taking DDVAP the more likely you are to be running off to the WC.  Dont get me wrong i dont not drink! the DDVAP makes me not as thirsty and i can handle the  6 hours quiet comfortably.
                       
                      If you can get a happy medium of tablets and spray the you shouldnt have too much trouble controlling DI. I.e tablet first thing on a morning after breakfast, then spray at lunch time, then spray again when I go to bed.
                      I have had two healthy children and they do not have DI.
                       
                      Sarah UK
                       
                       
                    • Chaz Manseau
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                      Message 10 of 13 , Dec 5, 2014
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