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Avatar universal

Multiple Stones, Multiple Types

Hello,
Over the past 3 months I have passed stones almost constantly. After the first stone passed I knew I had more... 3 showed up on the CT scan- now only 1 shows up but I have passed more than 2. My urologist refers to my stones as "flecks" because they are so small. In addition, it isn't just one kind... sometimes Calcium Oxalate, Sometimes Uric, Calcium Oxalate mixed with carbonate, sometimes mixtures of both and sometimes calcium phosphate is mixed with calcium oxalate or the uric stones. I have done tons of tests from the 24 hour urine tests (twice), blood tests, etc. and everything is normal. My magnesium was initially low and they do have me on a 500mgs of magnesium daily. My problem is no one can seem to figure out what is wrong with me. I am told I don't have medullary sponge kidney disease which I asked about because literally I haven't had more than 24 hours without pain for the past 3 months. I am in my mid 30s and have never had health issues at all until this began and now I have constant stones in both kidneys... literally non-stop. Anyone else experience this and have all normal lab results? I am hardly eating any meat, drink 4Ls of water with lemon each day to get my pH at the perfect 7 (that is where my doc wants it), eat minimal dairy (no milk or eggs) and very low sodium. Nothing seems to be working and the doctor just tells me to keep doing what I am doing, but this is ridiculous. I am grateful I don't have massive stones or need surgery (yet) but seriously... this cannot be normal. Anyone have anything like this happen? I do speak to a nephrologist later this week because my urologist (while nice) isn't really able to explain what is going on with me and I am constantly asking questions. I should say I have only caught about 10 stones in the strainer but I work full time and only strain urine maybe 10% of the time so I am sure I have had at least 3 times that amount.
Thanks for insight!
7 Responses
168348 tn?1379360675
COMMUNITY LEADER
May I ask how they determined you don't have MSK?  It doesn't always show up on a CT Scan from what I understand.

I feel really bad for you .. I, too, have had many stones and some show up and others don't on the CT Scans and some are missed on ultrasound and pass 24hrs later.

Ask your new doc about diet for the oxalate ones and maybe parathyroid check if calcium based.

Keep us posted!

C~
MSK with Stones
Avatar universal
Thank you. Whatever it is, this is not fun. I never even thought about my kidneys until 3 months ago and now, unfortunately, the pain makes it just about the only thing I do think about.
Yes, it was a CT Scan and since I began researching I have learned that it is not always detected like you said. When I asked about it, the urologist spoke with such certainly that I did not have medullary sponge kidney (I swear he thinks I am overreacting), I assumed he knew for sure. I am speaking with a nephrologist today and am insisting on an IVP.
They have checked my parathyroid and calcium levels as well. Parathyroid is totally normal. Calcium is in normal range, even though it is on the higher end of normal.
May I ask, have you found websites that have particularly good information on MSK and stone production in general? I have visited the Mayo Clinic site because I always trust their information but would love any reference sites you may have.
Thank you very much!
Avatar universal
I myself am suffering from chronic kidney stones. It seems that once I pass one ( my largest was 9mm, that required surgery) there are at least two more taking its place. Both kidneys are full of stones. My left kidney is considered non functioning because of its size and also is completely full of scar tissue. I see an urologist for when the stones are stuck and I need surgery or stents and my nephoroligst ( who has been wonderful)  to see why I am producing the stones , what kind they are and if there is anything we can do to make it stop. So far nothing has made them stop. Also because of kidney function I have hypertension to where I am on 1200 mg daily of blood pressure meds. I am also in my early 30s and NEVER had any health problems. This all started two years ago and no one honestly has been able to give me a straight answer. There are times the pain is so bad that my bp spikes and I end up in the ER. Which in return I feel like I am being judge as a drug seeker but my scans always come back that there is a reason for the pain. Lately my kidneys feel like they are tight if that makes sense, specially on the left side. The doctor thinks they maybe a spasm. Sorry for going on and on but you are not alone. I hope you can find out what is going on. I see it has been a while since you posted this, how did the appointment with the nephorologist go ?
Avatar universal
I am so sorry! It sounds like you have it much worse than I do so I feel terrible for even complaining. I hope they can get to the bottom of why you are producing the stones and make them stop.

The nephrologist was not very helpful, I am afraid. They refuse to do any further testing on me because they think I am totally fine and once the last of the little stones come out they should be gone. All my labs are normal and I just have a 2mm stone. It's just frustrating not knowing where the pain is coming from if everything is "normal." Oddly (and I am knocking on wood) my pain lifted last week and other than a twinge here and there I've been okay. My back started itching and of course I went online and found that this can be because of kidney disease. My doctors said that is not what is happening with me... my kidneys are functioning fine. Anyhow, I have another nephrologist reviewing my records just to be on the safe side.
I hope you start to see brighter days and thank you so much for your support and making me feel less alone with these troubles.
9907492 tn?1406607423
You sound just like me. They tell me there is nothing the can do for me and referred me to pain management. But that's not fun either but I honestly have no other choice.
9907492 tn?1406607423
Also I can't work I am going soon for my disability.
Avatar universal
Marier30- you mention your blood calcium was in the upper normal range. Was it 10 or above. If you are an adult you should never have calcium in the 10's. If you do you probably have a parathyroid issue even though your PTH level msy have been normal at that time. Check out parathyroid.com
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