The previous posts sure are familiar with one exception. I am in my early sixties. Healthy for the most part however, when I was in my 30s, was diagnosed with Medullary Sponge Kidney Disease. Nothing can be done except to see a urologist once a year. Long term results might be kidney failure..all the way to no problems in the future. In 2004, I was really struggling to make it through the day. My joint were swollen and I was just feeling old. I made this statement to my OB/gyn. She was very smart and told me that she wanted me to have a bone density test right now. She then ran further testing to find that my bones were leached of calcium and I had high blood calcium. I then had to go to an Endocrinologist who determined all of my hormone levels. The parathyroid was slightly high and the calcium slightly high. He said that was not enough to determine hyperparathyroidism but if I had kidney stones or high blood pressure, osteoporsis, this would be the determining factor. I told him to xray my kidneys. They are full of stones, I have erratic blood pressure and osteoporsis. He then gave me a hug and said he was sorry. I was diagnosed with hyperparathyroidism. The parathyroid glands control how your body absorbs calcium. If they go haywire, they can't determine how much calcium is required so they just tell the body to dump all calcium through the kidneys, causing nephrocalcinosis, which is calcified kidneys. My hyperparathryoidism turned out to be all four glands, called familial hyperplastic hyperparathyroidism. They removed all fours parathyroid glands and grafted a portion of one gland into my right arm in hopes that it will function, It did not function so I am left with no way to absorb calcium, called hypoparathyroidism. I thought my kidneys were improving but landed in the ER two times last week. I found a great urologist at a teaching hospital. He found many stones but I have one in the left kidney that is not passable. He also said the stone is not the type stone that can be broken up. He has suggested the laser or the more invasive procedure however we are watching this stone for 6 months. My question to all of you with a huge history of stones. Have any of you looked beyond a urologist? See an Endocrinologist...and study the website, www.parathyroid.com If the symptoms fit, then your life can be improved. It isn't a common disorder but if you have a lot of kidney stones, it is something to rule out if nothing else. There is a reason for kidney stones. Kidney stones are not normal. Doctors just don't seem to understand the calcium disorder problems with the parathyroid, Many doctors will never see a patient so its not an easy diagnosis. Look for an endocrinologist that specializes in bone disease, calcium disorders, hyperparathyroidism and metabolic disorders. You all deserve more than pain meds from the ER, and it shouldn't be hurting.View Thread
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