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!
MSK with Stones
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!
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 ?
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.
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.
Also I can't work I am going soon for my disability.
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