Discussions By Condition: Medical Stories

Nephrocalcinosis, medullary sponge kidney, randalls plaque

Posted In: Medical Stories 2 Replies
  • Posted By: momasaur
  • November 29, 2008
  • 09:42 PM

I have been diagnosed with all these things. I have produced kidney stones chronically for 20 years now. I am 45 years old. I have had hyperparathyroidism and have had both parathyroids on the left side and half my thyroid removed . I have had stents, basket retrieval, lithotrypsy, and several kidney infections that resulted in septicemia. I continue to develop stones and I am often naseaus, vomiting, suffer from renal colic etc. I am soooo tired of all this. The doctors are offering me no help except for drugs for pain management. They say I am not in renal failure and so don't seem to take any of this seriously. I have missed so much work and am getting quite depressed. Anyone out there know anything about these things? Any advice?

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  • I have been diagnosed with all these things. I have produced kidney stones chronically for 20 years now. I am 45 years old. I have had hyperparathyroidism and have had both parathyroids on the left side and half my thyroid removed . I have had stents, basket retrieval, lithotrypsy, and several kidney infections that resulted in septicemia. I continue to develop stones and I am often naseaus, vomiting, suffer from renal colic etc. I am soooo tired of all this. The doctors are offering me no help except for drugs for pain management. They say I am not in renal failure and so don't seem to take any of this seriously. I have missed so much work and am getting quite depressed. Anyone out there know anything about these things? Any advice?I see this post is pretty old but on the off chance you check back on it occasionally.... I am not familiar with Randalls but I am with nephrocalcinosis and medullary sponge. I was diagnosed five years ago and was told it was 'non-symptomatic' but we both know that's a joke! I develop gravel on a regular basis and while I am thankful they do not grow to stones, they still hurt like ***l. I also get sick to my stomach to the point I dont want to eat and start loosing weight even if I do eat. My feet swell to the point my shoes dont fit and when I feel the swelling coming into my hands I have to take my rings off before it gets bad or they will get so tight they will make my fingers hurt.The good news is I am getting better at controlling it. I didnt use to lead a very healthy lifestyle so changing my habits has taken me a while. Before all this I would have a few cups of coffee in the morning then sip on one or two sodas the rest of the day. Now I have half as much coffee in the morning and drink water all day the rest of the day. That is the hard one for me but I can absolutely tell the difference when I dont drink the water. I also stay away from highly processed foods. I didnt think this would be so hard because I thought I ate pretty well but read the labels. You would be surprised what is high in salt. If I eat Chinese one day and order a pizza the next I am almost guaranteed to have trouble the next day. Take Calcium pills or eat a lot of high calcium foods The more you take in the more you will flush out and wont get 'stuck'. The doctors have probably told you all of that but stick to it, it works.What the doctors will not tell you. Take cranberry pills. When you do get stones or gravel or what ever you want to call it max out on them. You could drink the juice but there is no way you're going to be able to drink as much as there is packed in those little capsules. A couple of months ago I spent four days on very strong pain killers and still puking from the pain. I started taking 2 pills four times a day. by the next morning I could feel the stones moving and they were gone in two days. Now when ever I start feeling it coming on I start in with the cranberry pills, it always works.Also, I spoke to a diatitian and was advised do not eat grapefruit. Other citrus fruits are fine but there is something about grapefruit and medullary sponge that do not mix.
    Anonymous 42,789 Replies
    • February 15, 2010
    • 11:48 AM
    • 0
    Flag this Response
  • I to have MSK and was diagnosed 8 yrs ago however I have passed stones sine my 10 yr old son was 9 weeks old.. It was over looked for years.. I've suffered pain since I was little but my mother never looked unto it and I also had problems with cysts on my overies and uterus which were surgically removed.. So everytime I went to the er or dr they just blew it off as cyst until 8 yrs ago.. It all depends on what your stones are made of.. Both of my kidneys as well as bladder and tubes are full of.stones which the Urologist won't touch me as he's scared that they'll get stuck and.I'll go into kidney failure.. So I don't have any options at this point other than pain meds which I see a pain management dr for.. Other than my husband and boys as well as dr's no one seems to understand!! Unless they're going through it too. I've been demanding to see a nephrologist but my primary dr doesn't want to refer me, so I'm at a point were I don't know what to do.. Now I'm having issues w/ my heart were it's beating over 200 beats per minute and without even trying I've dropped over 120 lbs. I've cut out my calcium and any type of citric acid as my stones are made up of calcium / oxlate. Does anyone have any of these symptoms too? Thx for reading this and helping!! Also I have blood in my urine always and renal colic too as well as swelling and unlike some of you I'm on water pills (perscribed) but still only irinate 2 times a day if I'm lucky.. I'm teally worried as I have protien and.creatine in my urine too.. Sorry I didn't add that earlier...
    Anonymous 42,789 Replies Flag this Response
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