Kidney Stones Community
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Avatar universal

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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.
1 Responses
Avatar universal
WOW!! I am so sorry to hear that you are suffering like you are. Those that visit here, such as myself, can certainly relate to the pain that you are experiencing as we have all suffered that pain from time to time with kidney stones ourselves, some much more than others. I'd be very hesitant to adise you on anything since you've obviously already been seen by very competent medical people. I am not a physician and therefore can only advise on things I have experienced regarding kidney stones themselves. From what you have described, I honestly am way out of my league here and I have no advice for you except to keep pressuring your treating doctors to find a root cause of your problem. There is obviously one and hopefully they will find it for you soon. In the meantime, use your pain killers prescribed for you only when absolutely needed for your kidney stone pain because you don't want to create any additional problems while trying to get rid of your present problem. God Bless and I will keep you in my prayers.
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