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Hi, I'm 16 years old and suffering from what I've been told is medullar sponge kidney disease. I have been to countless doctors, including the mayo clinic in Jacksonville, Florida, Children's hospital in St. Louis, and many local hospitals. Every doctor that I've seen has thrown around many ideas of what my disease "could" be, but none of them have ever actually diagnosed me. It started out as a kidney stone two years ago, had gotten better on and off for the past two years. I had always had atleast one kidney stone every six months or so. We call my kidney stone's "flare-ups" because when I get them, it is impossible for me to control the pain without being hospitalized. Also, the doctors have said they are not entirely sure that my pain is kidney stones. The pain is a burning, stabbing pain that goes down my right backside and to my lower stomach on the right side. The stones are calcium-oxalate and are usually small. In the past six months, I have been passing a steady amount of "gravel" in my urine, which is basically small stones. Therefore, I am in pain all of the time. I have been put on countless medicines such as potassium citrate and hydorchlorothiazide. Not to mention the pain medicines, I have found that only Percocet and Norco can even touch the pain. And Phenergen helps with the nausea sometimes. I throw up from the pain almost every other day; Some days I am unable to get out of the bed, eat, walk, and keep anything down. On top of all of that, I am unable to urinate on my own. I have to use a straight catheter 4-5 times a day.  I have been unable to go to school, and have been put on homebound through my school. All of this has been very frustrating and we basically have no answers. I have recently had a cystoscopy to look at my bladder and ureter. The doctor said it was completely normal, other than that my ureter tube is smaller than normal. I need some way to cope with my pain and get a better quality of life. Can anyone please provide any advice you would think would help my situation? My mother and I would be very appreciative.
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7721494 tn?1431631564
Maddy, it sounds like a terrible burden for a 16 year-old girl.

Two doctors will be the most help right now -- your nephrologist and your pain management doctor. Strong opioids are the only answer for the pain of kidney stones.

Your problem is over production of calcium -- hypercalcemia. There are dangers here when we ask where is the calcium coming from. The bones are the storehouse of the body's calcium, and your bones may be losing calcium, making them brittle and easy to fracture.

Over secretion of the parathyroid hormone can cause hypercalcemia. One treatment is to remove one or more of these glands (there are usually 4.) Another hormone, calcitonin, helps the kidneys reabsorb calcium.

Nephrology is the specialty that knows the most about balancing "electrolytes" which is a function of the kidney. Calcium is an electrolyte. They are skilled at reading lab reports to diagnose various conditions involving calcium.

Calcium and phosphorus are closely related and have an inverse relationship. As phosphorus rises, calcium lowers.

Your problem may be managed with diet, parathyroid surgery, or medical means. Your nephrologist will make a diagnosis and come up with treatment options.

You and your parents would be wise to educate yourself on the complex function of the kidneys, and their relationship to the parathyroid glands at this stage of the game, so you can understand what your nephrologist is saying.

Search "calcium phosphorus relationship" for some information about these two electrolytes.

But pain must also be managed during the passing of stones. If you don't already have a pain management doctor, you may need one.

I wish you the best and hope this problem can be controlled soon.
Avatar universal
Thank you! I will definitely look into all of the things that you have told me. Educating myself on it may be the next step to diagnosing the problem.
Avatar universal
I'm so sorry you are experiencing so much pain. I can't even imagine what that must be like. I am thinking you must be an exceptionally strong person to be able to manage and cope with all you're going through.

By your post, I can tell you are very well-read, and very intelligent (your post is better written than many 'adults' on this forum!), so I am going to suggest some deeper, "complicated" stuff to read and study (because I have a feeling you've read, and probably *memorized* all the usual "easy stuff").

I'm going to suggest reading cutting-edge Journals! Journals are what they call these up-to-date pamphlet thingies that Researchers come out with. Researchers find out new things (from all of the research that they do), and since nobody else has heard about what they've found, they rush to publish their findings in "Journals." So, you will find things in Journals that are not found anywhere else. Here is an example:

And, here is a list from where I got that example:

Yes, a lot of it will be boring, but while your doctors are coming up with treatment ideas and options, you can be reading about all the latest stuff in Journals, so that if your doctor ever says, "Gee, I can't think of what else to do," then you can say, "Well, actually, I read about this new such-and-such treatment in this Journal..."

I hope my answer wasn't too boring -- I get the feeling you've probably read all the simple stuff on the internet, and that you might find some of the more complicated stuff interesting.
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