DI - Not a Head Condition
By Lolly Shultz

DI may not be life-threatening, but it is a very frustrating.

I am 62 years old and was diagnosed with diabetes insipidus (DI) in June 2001, after experiencing symptoms for 18 months that none of my doctors thought were significant. I was going to the bathroom all day and night and drinking huge quantities of fluid—I knew something was wrong. I went in twice over that time to the internist I had been seeing for longer than a decade. He told me that it was “all in my head.” My husband was the only one who really appreciated how miserable I was. The truth is, very few doctors know anything about DI. I am a nurse and had heard of DI, but when I asked whether I might have the condition the doctors all acted like I was crazy.

I finally made an appointment with an urologist I had seen in the past for blood in my urine; to get the appointment I lied, and said I wanted my urine checked for blood. When I saw the urologist, I told him my problem and what my symptoms were. He believed me enough to do some simple tests and found that I could not concentrate my urine. I was then referred to a kidney specialist who knew a lot about DI and had me undergo a water deprivation test at a local hospital. I have some slight ability to concentrate my urine. I was started on desmopressin nasal spray and what a miracle!

I feel a bit discouraged right now because the nasal spray is causing me some real problems with my sinus. I have been referred to an endocrinologist and perhaps there will be a better solution. This can be a lonely disease.