86 replies
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My name is Joan. I was dx with CDI 34 years ago at the age of 14yrs. Developed after sports related skull fracture. I started taking DDAVP Rhinal tube then used nasal spray and now use tablets. Had 2 pregnacies with minimal complication but really watched intake and output. Have had numerous unrelated surgeries and only once did I have any major complications. Had Sodium drop to 101 due to water intoxication with prolonged IV. In ICU for dayswith many complications. Rebounded well and now maintain on a high does of desmopressin but do very well with minimal attention. Guess I just got used to watching I/O. Would welcome any questions or discussion. I feel like I'm pretty good at managing this diseae and leading a very active lifestyle.
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I had DI with my first pregnancy. it developed around the fifth month. It was horrible. I have never been so thirsty in all my life and nothing I drank would satisfy it. Everything started tasting like pepper. I almost died because my doctor didn't recognize the symptoms as being a very rare form of an unusual condition that I didn't have before I became pregnant. I ended up having to get another OB-GYN and an internal medicine specialist. I retained all the toxins and urinated out nothing but what looked like pure water. carpal tunnel syndrome developed due to all the fluid in my body. I felt like I was going to die and after awhile I really didn't care. I didn't want to live anyway feeling so bad. After a cesarean section to deliver my chid I ended up in ICU due to kidney failure. Three days later they reversed and started functioning again on their own. I had optic nerve damage from all the pressure on my eyes from the fluid. My vision slowly returned but it was scary. My DI never returned but it was the most frightening thing I have ever gone through. My eye doctrine was convinced I had a pituitary tumor due to my visual field tests coming up indicative of that. I had three MRIs and none of them showed anything. I never bothered with more follow up. My son just turned 19 years old..... and I had a daughter three years after him and never had any of the DI symptoms with that pregnancy.
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I have had CDI for 3 years now. I've been on treatment for about 6 or 7 months. Mine came about as a result of a really rare type of pituitary tumor. It is comforting knowing that I'm not the only one who has this. To all of you who have this condition as well, I'm so sorry. I know how tough it can make life and personally I would love to talk to some of you,perhaps if you need a shoulder to lean on or would be willing to let me lean on you. Anyway, I'm hear and willing to lend an ear if anyone wants to talk to someone else who has the same condition as them.
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Hello group, my name is Renee, I am 27 years old and live in Kansas. I was diagnosed with Diabetes Insipidus in March 2009. I am trying to cope and learn all I can about this disorder. I dont know anyone around me that has this. There are times that I do feel alone in this battle. I try to explain the best I can but most of the time all I get is funny looks. As of right now I am on three sprays of nasal DDAVP each day. Any information that you can pass along to me would be so helpful. Also, I have a few questions if anyone would like to answer.
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Hello, I have a 9 year old adopted son who had CDI. We have been through many doctors and he is now seeing a endroconlogist (sp) but they are over 4 hrs away and have not seen many cases with unknown causes. He presented at 2 1/2 (he was in an orphange) with no know cause. He has been on tablet form of DDAVP since 3 and it seems to work for him. Recently he went for a weekend with my father and drank way to much liquid, after that he complained that his feet felt funny even with an extra dose of meds. Is this normal? I would love to talk with someone who has CDI and can help me understand what he is going through. He can't always tell me his self. Any other kids with DI that also have ADHD? Tracy
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I am 25 live in california, I was born with DI and was diagnosed at age 7. I am happy healthy and loving life.
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Hi,my name is Kim and I have an 11 year old daughter who was just diagnosed with DI as a result of brain surgery to remove a craniophangioma tumor in Nov. 2008. I look forward to any information or advice anyone has to offer.
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Hi. I have had CDI for 30 years. I was diagnosed when I was 14 yo. My DI is the result of a severe head injury. I take DDAVP. I used to take nasal spray now on pills. Would like to talk with others. Any women out there dealing with perimenopausal issues and DI?
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~-~~-~~-~~-~~-~~-~~-~~-~~-~~-~~-~~-~~-~~-~~- sent via careplace.com
Hiya I am Caroline, I have had DI for 17 years- there is no family history
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I understand I have DI that came on in life no history I also take tablets
**************Psssst...Have you heard the news? There's a new fashion blog,
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Caroline
From: rosielass >
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