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.
hi there, i work with the careplace team. i think careplace is awesome. i hope it will really help people to share, support eachother and learn. we can all use support and understanding and it is so important for all of us who have experienced difficulties to have a safe and informative forum in which to do so. thanks for visiting - it is really rewarding for all of us to see people reaching out to eachother - it is what careplace is all about.
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.
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.
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.