- CASE FILE
I have what's called Loin Pain Hematuria Syndrome. It's like living with kidney stones believed to be caused by nerves but not fully known.
ABOUT THIS CASE FILE
Loin pain hematuria syndrome (LPHS) and thin basement membrane syndrome is not well known dieases. It feels like you have kidney stones on a daily basis and sometimes I do get stones and the pain can become worse where it does put people in the hospital. Alot of people get missdiagnosed because the doctor says its kidney stones go on home or can not find anything wrong besides a few symptoms other then the severe pain. It took me 6 years to be diagnosed because I knew something was wrong and I had to fight to find a doctor to believe me. Even then it's something a kidney specialist may have heard of but dont know much about so its doctor after doctor to find one who may try something to help. This diagnosis is found by exclusion. I was tested for every kidney diease in the book. After 5 years of trying to find an answer of what was wrong I found a kidney doctor that thought I may have had it so I then went through 1.5 years of tests and 3 doctors to confirm I had LPHS and thinbasement membrane syndrome (is one of the only common things found in people who have lphs) then after the diagnosis there has only been study's on how to treat it. Mostly treatment is pain management. But in these days pain management is near impossible to find a doctor to help you because they sont know the diease. There are a few surgerys that have been tried over the years and just now recently found that a kidney autotransplant is the only other thing besides heavy pain medication known to help control the pain. Because doctors do not fully understand the diease the only thing fou the patient which is me is pain control. Over the years of being on pain meds my body has gotten so use to the medication that is not working the best. I finally after a year of fighting with my insurance company got the surgery approved and scheduled. The insurance companys dont even know what LPHS is so deny treatment alot. But I do have the dieases in both my kidneys so I most likely will need to have the kidney autotransplant done twice to finally live my life again. The pain has become so bad I cant work and it's very hard on my family and friends. Not only do some not believe you just like alot of doctors ( because they dont know what lphs is and it's an unseen diease) bit the people that need to go to the er with me and help me in some day to day activities.