How many of you were born with DI?anyone else in your family have it?
My daughter was diagnosed with this yesterday after her MRI results were in. She is almost 12, but has been on DDAVP for about a month because I insisted that her symptoms weren’t normal. No one else in our family has this and it hit her suddenly, around February. It has just taken a while to get a dr to take us seriously and do the MRI.
no children,along with all my illnesses i have endometriosus and cystic ovarian disease and hypothyroidism i have been pregnant twice and lost them in 2nd to 3rd month both times.doctors said i didnt produce enough hormones to sustain the fetus.so i just spoil my nieces and nephews to no end lol.
Yes I know the inherited form is very rare. My parents or grandparents don’t have DI, so the doctors didn’t know I had inherited DI. When my daughter started drinking, everybody thought she was copying my behaviour. Last year she did a blood test and was positive.
Do you have children?
I was born with DI, and so is my daughter (6). The need for fluid came when I was 9 months old, I was diagnosed 8 years later.
My daughter began to drink a lot around 1 year old, and she is just recently diagnosed DI. So I have the inheritable form of DI.
I was also born with it and it took along time to diagnose mine as my mother anf father divorced when i was a baby and my mother had no contact with him.seems it runs in my dads side of the family.which i didnt find out till 15 yrs ago when i found my dad.i have aunts uncles and cousins and a half sister with DI.Di is rare but to have it hereditary i hear is even more rare.which is why i asked the question.
I don’t know what deseases you’re talking about, I can’t find a translation of them! I don’t think they’re a cause of DI? I hope you can live a normal life?
I’m sorry to hear you lost your unborn baby’s, that must be awful.
I was diagnosed in January and am 54. looking back there were many signs of this, but it wasn’t bad until last fall and winter
darkangel62 - sorry about your history
I wasn’t born with DI. It didn’t appear until my early 20s, but it went diagnosed for a long time. I was miserable for years. My father would get angry at me because he thought I had no self-control when I drank so much. Of course I had to use the bathroom every hour or so. When I finally moved to my own place, I found a great endo who eventually diagnosed me. I first had to take terribly painful injections. When DDAVP became available, it changed my life. I’ve had DI for almost forty years, but I can live with it now.
Ha! I remember thos injections - pitressin tannate in oil. We must be about the same age: I was diagnosed at 14, just over 40 years ago.
My DI started after a severe viral infection which had me off school for three weeks, and the doctor told my parents I was just drinking out of habit. When I look back now, it just defies belief that anyone would think a 13 y.o. is getting up to the loo up to eight times a night, when I had to go outside the back door to get to it, in the middle of winter, with frequent heavy frosts.
They tried to restrict my drinking, making sure I didn’t go to the indoor tap on these nighttime visits, so I went to the outside tap, over the frosty grass (when you have DI…). One night it froze.
My mother was so (and still is) intimidated by doctors she wouldn’t challenge what they said, even though she knew something was wrong. In a way they did me a favour because within six months I was seriously ill, weighed barely 4 stone & when we moved & I was taken to a different doctor his first words were ‘who let this child get in this appalling condition’ and spent a month in hospital recovering.
DDAVP changed my life too, but those injections were certainly better than the alternative.
I’m one of the rare ones, in that my DI started resolving itself (and I had complete DI, not partial) about three years ago and is almost gone. According to the DIF website it can 'occasionally improve, but only after 40, and rarely disappears) so don’t know if it’s going to go altogether. The only connection I can make is that the first improvment was within a few months of the first menopause symptoms.
Maureen.
norefturn diabetes-insipidus-cpt8552@lists.careplace.com wrote:
I was not born with it either. No one in my family has it and I am still idopathic. I had no signs or symptoms until one day and it hit me like a brick.
Hello,
I would like to do a research survey with DI patients. I, too, have had DI since my 20’s and going on 35 years. My frustration has been no matter how much exercise and diet I do, my body will not let go of any weight. Do you experience the same problem? I just need to take the time and develope a survey to send to all to fill out and see if there are any common threads.
Thanks for your response,
Stephanie in Texas
— On Wed, 4/23/08, norefturn diabetes-insipidus-cpt8552@lists.careplace.com wrote:
From: norefturn diabetes-insipidus-cpt8552@lists.careplace.com
Subject: Re: [diabetes-insipidus] Poll… just curious
To: pasturesofpraise@yahoo.com
Date: Wednesday, April 23, 2008, 3:19 PM
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this line will be cut off in your replyI wasn’t born with DI. It didn’t appear until my
early 20s, but it went diagnosed for a long time. I was
miserable for years. My father would get angry at me
because he thought I had no self-control when I drank so
much. Of course I had to use the bathroom every hour or
so. When I finally moved to my own place, I found a great
endo who eventually diagnosed me. I first had to take
terribly
painful injections. When DDAVP became available, it
changed my life. I’ve had DI for almost forty years,
but I can live with it now.__
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hi, I have been on DDAVP since January, and in 3 months put on 14 pounds. same like you, no matter how much exercise or dieting I did, woke up heavier every day. the bloating was making me look like a puffer fish. finally decided to not take my DDAVP one night, and suffer through the consequences… woke up 6 pounds lighter… go figure
Stephanie,
I am in exactly the same boat. Let me know when you want to do a survey and I will be happy to fill out. I was diagnosed at age 17. During the 3 months it took to get a diagnosis I gained 60 pounds. I have never been able to get it all off. I have worked with a personal trainer, dieted, everything. I have picked up running now with my first 1/2 marathon at the end of the summer. Nothing works to lose the weight.
I would be happy to participate in a survey, I have the same problem one year after my surgery. The bloating is the worst. I have tried not taking ddavp at night and lost 5 to 6 pounds. However, I also am having the problem of unstable sodium levels. If the weight goes down, the sodium level goes up.> To: wanda.hall@live.com> From: diabetes-insipidus-cpt8552@lists.careplace.com> Subject: Re: [diabetes-insipidus] Poll… just curious> Date: Tue, 10 Jun 2008 13:58:29 -0400> >
Its funny up till now I have thought I have only had DI for 3 or so years but mum said she took me to the doctors many times as a baby for being so thirsty so much, so I grew up carrying a water bottle around with me everywhere and mum was good with it, 3 years ago I overnight started to drown myself with 14 liters a day, was the worst several months of my life and my husband thought I was losing the plot! Its all good now, everyone supports me, and I didn’t have to travel outside for the loo, I’m sorry Maureen for your experience, sounds so horrible for a child.
I don’t know if its inherited as Mum left my father when I was 3.
Great to hear other peoples stories though.
anything i can do to help…survey away
I was born with DI. I was diagnosed when I was 7. I drink 5 gallons of water a day with out the medication. I did not meet my bialogical father until I was 22. He has it also. So mine so far is hereditary. I don’t have any children yet.
i wasnt born with di and so far no one in any of my family has this condition. i would love to take a survey anything to help! without my nasal spray i get up to 8 gallons of water a day. and yes i had no signs or systoms untill one day and it hit me like a bag of bricks! i delt with it for about a month then went into the er one night cause i was so sick. the hospital couldnt even believe that i was drinking so much. they have never seen anything like what i have and my doc had to do much research on it. boy do i love him to death! my DI is cause from a tumor on my patuitary gland.