If, for some strange reason, you set out to design a kidney that could form stones as quickly as possible, you might end up with something like a medullary sponge kidney.
Medullary sponge kidney (MSK) is a condition in which a portion of the kidney known as the medullary pyramid is found to have dilated tubules (tubules are small tubes through which urine drains) and numerous small cysts (cysts are fluid filled hollow spaces). The cysts are small, measuring from 1 to 8mm, but are numerous. The cysts give the kidney, when cut, the appearance of a sponge – from which the name of “medullary sponge kidney” was coined. These cysts and dilated ducts lead to poor drainage, making it easier for stones to form. These abnormalities can be seen throughout both kidneys or may be localized in only one part of a kidney. The stones formed in MSK tend to be numerous and scattered throughout the kidney.
How do I know if I have medullary sponge kidney?
Medullary sponge kidney is felt to be non-hereditary (you don’t pass it on to your children). Many patients with MSK never develop problems and don’t know they have the condition. One study estimated that MSK may occur as commonly as 1 in 200 persons while other more conservative estimates report an occurrence rate of 1 in 5,000 to 20,000 persons.
Because many patients with MSK develop no symptoms and remain undiagnosed, reliable data on how many will form stones is not available. In one study of 56 patients from one hospital, the authors reported that 30% of the MSK patients that they studied never developed stones. Among the stone formers, MSK appears to be more common in females and usually first presents in the 30s.
The diagnosis of medullary sponge kidney is made with imaging studies, either with an intravenous pyelogram (an older type of x-ray) or with a contrast CT scan. These imaging studies will show a characteristic distribution of stones or calcifications in the location of the medullary pyramids and contrast pooling in dilated tubules. In order to confirm the diagnosis, the imaging study should include intravenous contrast in order to demonstrate the dilated tubules that are the hallmark of MSK. However, most CT scans for kidney stones are performed without contrast and in this case the diagnosis, while likely, is not considered definitive because other stone related conditions can also lead to an appearance similar to MSK on a non-contrast CT scan.
Non-contrast CT scan of a patient with medullary sponge kidney. Multiple stones and calcifications can be seen in both kidneys. To see examples of contrast accumulating in the medullary pyramids of MSK patients on a contrast CT scan or intravenous pyelogram, visit these sites: CT scan or intravenous pyelogram.
What are the symptoms of medullary sponge kidney?
McPhail and colleagues reported that among 56 patients with MSK, the most common presenting symptoms included:
- Flank pain in 52%
- Microscopic blood in the urine in 36%
- Visible blood in the urine in 16%
- Urinary tract infection in 7%
- Abdominal pain in 7%
- Testicular pain in 4%
- Imaging for other causes in 4%
What type of problems can medullary sponge kidney cause?
Individuals with MSK most commonly present with kidney stones, urinary tract infections, or blood in the urine. In individuals with MSK who form stones, other metabolic abnormalities that predispose someone to form stones are also commonly found, including hypercalciuria (high calcium levels in the urine) and renal tubular acidosis (a disorder with the kidney’s handling of acids).
It therefore appears that just having MSK by itself is not enough to form stones (30% of MSK patients don’t form stones). However, combine the abnormalities found in MSK with someone who has a metabolic tendency to form stones and you will often see an astounding number of stones developing throughout the kidneys.
X-rays for patients with MSK are often impressive for the sheer numbers of stones seen. Not all those stones will necessarily be in a position to drop into the ureter and cause traditional stone symptoms. In order to do so, the stones need to have access to the hollow collecting system portion of the kidney. Instead, many are often embedded in the solid tissue of the kidney (the parenchyma) where they are unlikely to result in a stone passage.
In some patients however, the non-obstructing stones seen in MSK can be associated with significant and chronic pain, even if they are not passing. The pain in this situation can be constant in nature, unlike the episodic pain traditionally seen with kidney stones. It is not certain what causes this pain but authors have proposed that the small numerous stones seen in MSK may cause obstruction of the small tubules and collecting ducts in the kidney, leading to the pain. This pain can be debilitating and treatment is challenging. Narcotic medication, even with large quantities, is often not adequate. Some success with pain control for MSK patients with this type of pain has been reported using laser lithotripsy (see below).
The most common stone types in MSK are calcium oxalate and calcium phosphate.
Thankfully, MSK does not commonly lead to kidney failure.
What can be done about medullary sponge kidney?
Treatment for MSK focuses on prevention and treatment of stones, management of pain, and prevention of infections. There is no treatment available to fix or remove the small cysts and dilated tubules associated with the condition.
In stone formers, maintaining a high fluid intake and treatment with hydrochlorothiazide (to lower urinary calcium) and/or potassium citrate (to raise urinary citrate) are used. Metabolic evaluation with urinary and blood testing can be used to identify specific metabolic abnormalities that increase a person’s risk for stones. In addition, some authors advocate the use of hydrochlorothiazide in all patients with MSK, even when urinary calcium levels are normal.
Treatment for stones that have already formed include the same approaches used for other stone patients, including ureteroscopy, shockwave lithotripsy, or less frequently, percutaneous nephrolithotripsy. Due to the large number of stones formed in MSK and the fact that many of those stones may not be within the collecting system, it is not usually necessary or possible to completely eradicate stones in a patient with MSK.
In patients who have chronic pain associated with MSK, ureteroscopy with laser lithotripsy (called “ureteroscopic laser papillotomy”) may be an option to relieve discomfort. The procedure involves fragmenting and extracting all visible stones in the kidney with the intent to “unplug” and clear obstructed ducts that may have stones trapped in them. In a paper from three institutions, Gdor and colleagues reported on their experience with a total of 65 patients who collectively underwent 176 procedures. All patients in the study had chronic flank pain and multiple non-obstructing kidney stones. 50 patients had followup information available. The majority of patients who underwent this procedure experienced a reduction in their pain (83%). On average, the duration of pain relief from surgery was 26 months. Of note, 17 of the patients in the study had a diagnosis of MSK and their pain relief was similar to that seen in non-MSK patients.
If you have been diagnosed with medullary sponge kidney, share your experience or ask a question below.
References:
Campbell-Walsh Urology 10th Edition, 2011.
McPhail and co-authors, “Nephrolithiasis in Medullary Sponge Kidney: Evaluation of Clinical and Metabolic Features”, Urology 2012.
“Medullary sponge kidney” National Kidney and Urologic Diseases Information Clearinghouse, 2008.
Gdor and co-authors, “Multi-Institutional Assessment of Ureteroscopic Laser Papillotomy for Chronic Flank Pain Associated with Papillary Calcifications”, Journal Of Urology 2011.
Editor’s note: This post was updated on 5/15/12 to include more information on diagnosis, pain related to medullary sponge kidney, and treatment options.
I was diagnosed with MSK recently after going to urgent care and them ordering a CT scan. My symptoms were awful back pain and blood in the urine. My question is, what type of doctor do I need to follow up with that will control my pain and take me seriously. I don’t have stones and have never passed one.
You need a urologist that is educated in msk. Not all urologists understand our condition. I would advise you to sign up for the msk group on Facebook. It has alotbof knowledge
I was diagnosed with MSK a few days ago, on my 27th birthday as a matter of fact. My doctor asked me to do some research and I’m glad I found this thread. I’ve had a lot of kidney related issues for the past 7 months. As a child, I had lots of UTIs and a kidney infection. I’ve had a few UTIs since high school but not enough to alarm me. I had one small kidney stone a few years ago and had a crappy doctor so I just let it run its course. 7 months ago I woke up in the middle of the night with horrendous pain and then found myself in a hospital bed for a week. I had pretty big stones on my left side. The doctor did a “surgery” through a stent and blasted as many stones as he could. This is when we learned that I have an incredibly tight ureter so he was unable to bring down any fragments for testing. I had the stent in for 3 weeks and it calcified to my body. Since then, I’ve been put on a diuretic and Theralith. I’ve also had 2 lithotripsies and 5 other hospital visits. I’ve had nearly weekly trips to the urologist and local radiology place. The stones were not going away. I was repeatedly told that since my stones were not causing any blockage or in the ureter that my kidneys were not the cause of my pain. But it’s pretty obvious that the pain is coming from my kidneys since that’s where it hurts. After causing a scene at my urologists office, he finally threw in the flag. He just couldn’t figure out what to do with me. He recommended I see one of his partners who specializes in kidney stones. (Why hadn’t he done this sooner!?) I’m in constant pain. I’m constantly on some sort of prescription pain medicine. . I waited a month to see this new urologist. As soon as I told him my story and symptoms and we looked at my CT, he said MSK and papillotomy. Since my last trip to the ER diagnosed me with a bad kidney infection, I’m going back to see him this week. My questions are.. Has anyone ever had success with the papillotomy? Does it hurt? Has anyone had one with a tight ureter and rapid calcification? Has anyone who has had a papillotomy needed to have more than one? Is there anything recommended for the constant pain? I’m constantly missing out on my life. I’m constantly missing work. I’m an emotional mess and borderline depressed. Is there a trick to get through this?
This is meeeee to a t my life is herrendous and feel so alone
Meagan if you ever get this message please look me up on Facebook Erin Eggleston I’m also in the MSK support page on Facebook. I know what you are going through and we seem to have a lot in common. Please send me a friend request… Ur not alone!
Ur not alone! Erin Eggleston on Facebook. Or go to MSK support page of Facebook.
I was recently diagnosed with MSK not even a month ago. I have had so much pain, and have spent most days taking off work or curled up screaming in my bed. I have a few stones (5 or 6) that still have not passed. This is very new for me. I am looking for a new doctor because the doctor that I have now keeps telling me they do not believe my pain is being caused by my MSK or kidneys at all. Any recommendations?
I was diagnosed 2 years ago and im still going through this! I’m seriously going to freak out if someone tells me it’s not my kidneys causing my pain!!! I feel you on this… so frustrating!
Oh sweetheart, my heart is hurting for you. This was is my story. They chucked drugs at me like crazy during a very similar experience after being diagnosed. Well of course I became chemically addicted to opiods. It was horrific!! Finally after being treated horribly treated by so many doctors, I became terrified of being treated that way again. So I basically don’t. I won’t. For anything. That’s not a rational way to deal with it just you get that way. It’s so hard not to be taken seriously or even told you want drugs while I always admitted my addiction and went out of my way to say no narcotics. I sure hope this turns out better for you. I would be interested to know if anyone has found a good nephrologist for msk!
Msk well ive had now for 15 yrs pain every day. Its very fustrating some dr are not familiar with it and the constant pain wheather a stone is dropping or not.you just adjust your life to it.i do take pain med without it the pain would be unbarable .my sugustion is find a good pain management so you can live a good quality of life work and normal functions become managable
I have joined an msk group on fb and it has been very supportive and answers all my questions. just go to fb and type in medullary sponge kidney and you will see the group. im trying to start a group for Canada, and possibly Edmonton. hope this helps ladies.
Hey! I was diagnosed back in November I believe with MSK and it’s absolutely exhausting. Other people that do not have this disease don’t realize just how much and often I hurt. I have two little girls, 4 and 2, and sometimes I just don’t even want to participate in what they’re doing. I’m depressed because all I seem to do anymore is hurt and I’m always uncomfortable, never any relief. My Urologist seems to think that the larger stones or the stones that fall is best if I just push myself through it. I’m wondering if I should ask for a referral to a Nephrologist? Or if I’m just going crazy. I went to the ER the other night and all the nurses, doctors, even radiology techs were looking at my scans because they’d never seen anything like it. Encouraging. I’ve been hurting in these areas since I was in high school, blaming it on womanly things, it wasn’t until I ASKED for a CT Scan that they found out that I have MSK.
Anyone have any opinions about asking for the referral?
Reading these comments feels like I am reading my life these past years!
I am now 25. Suffered from flank and pelvic pain for 2 years. Pain/discomfort never ends. Occasionally the pain is so overwhelming that my whole back and pelvic area seize up and I crouch over unable to move.
CT scan in May last year showed possible MSK (I have multiple stones and cysts with kidney damage evident) but it took a year for the urologist to tell me! He didn’t believe my pain was kidney related but Now I have been referred to a nephrologist which I hope will give me further insight.
Recently the amount of UTIs I get is increasing, to a monthly occurrence. I feel my stones aren’t passing. I also suffer a lot of fatigue. Does anyone have this problem? I could sleep app day everyday. I am lucky I am able to function at work but I push through because I feel obligated by my peers who say I’m too young to be tired etc etc.
I’m thankful my doctor is understanding and believes the struggles I go through
To be able to talk with others who understand the pain and fatigue is great!
I have been recently diagnosed with mellahary sponge kidney disease. I have suffered for 6 years with kidney stones, kidney infections, uti s and kidney pain. It effects my every day life. It feels like it’s taking over. I finally got diagnosed and still doctors don’t want to help or take me seriously. I’m crying in pain as i type this. My family gets frustrated with me cause I’m always in pain. I have a 9 year old that is my whole life. I want my life back. Does anyone have any advice please? Thanks
As far as stone prevention goes, it really depends on what is causing you to form stones in the first place. I personally drink a lot of water and lemonade. I have been on potassium citrate for a couple years and that has been a game changer for me personally. My stone count has been greatly reduced since I have gone on that.
Like I have said in previous posts, I have pain associated with MSK with or without stones present…but no where near the pain level if a stone is passing.
Pain management is key: try your best to stay off pain meds! Hot baths help me the best. Even brisk walking can sometimes help the stone pass quicker…but, even I know, it’s hard to walk when you are curled up into a fetal position and crying for mama
Find a good urologist that understands MSK!
Hello, I was finally given a diagnosis of MSK about 6 months ago after a lifetime of UTI and kidney stones. As well, the onset of seizures nearly two years ago. I feel 100% horrible 100% of the time. When i asked my nephrologist why I urinate constantly ALL NIGHT LONG…he says I shouldn’t. When I ask why I sweep so bad with physical activity or while standing for long periods…he’s says I shouldn’t. My Urine smells of ammonia…he says it shouldn’t. It is definately clear to me that these are symptoms and I am wondering if my nephrologist is just uneducated specifically about sponge kidney with the presence of symptoms as it is typically an a symptomatic disease. I feel like he stopped studying at “generally asymptomatic”!! My question is has anyone else experienced seizures both grand mal and absent with MSK and I am really sick al the time. I also feel a weird sensation of fullness or swelling in my kidneys. They often feel like there is so much pressure they could pop and can make sitting upright very painful. Anyone else? A lot of my symptoms are indicative of failure but my doctor says I have at least ten years before that will happen. I feel so confused sometimes. Is anyone else experiencing any of this?
*swell not sweep
Hi. I too have MSK and around the same time after being diagnosed, I too began to have seizures. Please tell me more of your story about the seizures.
I’ve just been diagnosed as well
I have seizures due to my potassium dropping dangerously low. I been rushed to the hospital after a seizure while getting my hair cut and my potassium was so low they started three forms of potassium by IV and an injection in my butt. I was diagnosed with MSK about 21 years ago. I was passing several stones. My urologist gives me HCTZ and potassium citrate (4 different kinds) and my stones are very minimal. I have not had a seizure in 2 years and the pain is managed without any pain meds. I occasionally pass stones but not to often. I have several stones in my kidneys but they are just hanging out for now. I can say the most important thing is a EXTREMELY educated doctor with this disease.
I have had MSK for a number of years now, and mostly it is under control by going on a low-purine diet. My nephrogologist in QLD, Australia advised this. A low-purine diet is also what is used for gout (but not, it is not gout, as I’m sure you have all heard). Sticking to this diet has reduced all of my symptoms considerably – when I “cheat” within a day I have kidney pain and joint pain, so I don’t cheat often. I hope this helps everyone else out there with this condition. I rarely get any UTI’s now and only occasionally have pain in my kidneys.
Rebecca where about a in qld r u?
I’m so glad I found this thread! I’m going back to get another ultrasound and x-ray tomorrow – it’s been 1.5 years since I last went to the doctor. I, too, told him my kidneys always hurt and he said they shouldn’t hurt. I think I’ve passed 20 stones within the past 6 years. My last visit showed about 6-10 stones in each kidney. The largest I passed was 7-8 mm!
I am very curious about kidney calcification – do any of you have that? It’s pretty scary to see a white kidney!!! I’ve started using Young Living products, NingXia Red nutritional drink w/ several citrus oils in it, along with taking Vit D3 w/ K2. This is supposed to take the calcium from your soft tissues and put it back in your bones where it belongs.
It’s been nice to know I’m not alone with the constant nagging pain. I really don’t have it too bad that often, I guess I’m used to it now… but when I do, I oil up with some different oils that are good for deep muscle and joint aches.
I’d be happy to share info or samples with anyone interested in YL’s products.You can click my link above to visit my site and leave me a comment here or there.
I’m 32 and have dealt with this for ten years now. I’ve had laser lithotripsy three times in those ten years and always have multiple smaller stones in both kidneys. I just recently was diagnosed with MSK after switching urologists to one who actually believed me when I said I had flank pain every day. I can’t tell you how many times I’ve heard “there are stones in there, but they aren’t obstructing, so you shouldn’t be having any pain”. And you described the pain well–I say it’s like an dull achy cramp, not always terrible, but almost always there, enough so that it makes life uncomfortable.
What kind of oils do you use when it gets bad?
I just started Ningxia red daily. Hoping it helps with nagging pain and I’m able to pass my stones easier. Are you using any oils topically? I’m also thinking K & B oil?
My husband is 32 now and was born with MSK, I am really getting worried because we changed everything when we found out 12 years ago however the last 2 weeks he has been covered with hives we went to the ER a few times now for the itching and nothing there doing it helping, is it or could it be from something else going wrong with his kidneys, we are not doing anything new. we don’t eat out at all, all soaps are the same Dr’s at the ER thought it hives but nothings changed ???????
I was diagnosed in March of 2010 with MSK. I have had several operations 8 to be exact, including lipsotripsy along with basket extractions and several stents put in. Reading comments I have also been told the same thing, that I should not have any pain. Well tell that to my kidneys. Unfortunately during a basket extraction procedure they collapsed my tube. I have never passed a stone on my own, and now I have a damaged tube that will not allow me to pass them. I have to have surgery ever time. My question is, does anyone else have swelling in their side? Now I know UTIs are common with this as well but I have been through this enough to recognize the signs. I get this pain in my side around towards my back, still bearable, just enough to say hey remember you have a kidney disease. Once that pain comes, I Can feel a bulge in my side, to run my hand down my side is unbearable and I can feel, what can only be my kidneys swelling. Then the fever and nausea start and usually with 24 hours I’m in the ER… I personally try to hold off until I can tell if there is blood in my urine, most hospital won’t do anything until there is blood. Most days I’m ok, my right kidney is the worst, ( no problems with my left) I don’t take pain meds well and I hate taking them and most if the time they make me feel worse. Nothing eases the pain, applying pressure to my side helps some. I am pretty frustrated as well with getting no answers for the pain. I swear I’m to the point where I can tell whether or not the stone is cutting through my kidneys. I’m also stuck between a rock and a hard spot because I have 8 stones currently between both kidneys but all my levels are normal. So I feel like I have no choice but to get sicker before these Drs take this pain seriously. Not everyone is drug addicts looking for a high, some of us are trying to get through the damn day.
I UNDERSTAND TOTALLY WHAT YOU R GOING THRU I HAVE ALOT OF UTI’S FOR YEARS NOW. AND AT LEAST ONCE A MTH I HAVE BRIGHT TO DARK BLOOD IN URINE THAT LASTS FOR 2WKS. AND ALL THEY SAY IS TAKE ANTIBIOTICS, I HAVE FOR 7 YRS NOW. THERE HAS TO B SOMETHING A DR. CAN DO FOR ME. AND ALSO I HAVE A SPONGED KIDNEY, SO IF ANYONE HAS ANY ADVICE PLZZZ LET ME KNOW. THKS, WENDY
Yes please if anyone has any advice too I’d greatly appreciate it!
I am going through the same pain it all started by passing stones like it’s going out of style. Then, I started getting nauseous after strenuous activity. Then it became almost everyday with pain in the kidney with no stone at the moment at all. If only I had a penny for everytime I have heard that the stone isn’t obstructing and still up in my kidney that I shouldn’t feel it. Then don’t even get me started on the extreme exhaustion. I’m 27 years old and feel waayyyyyyy older. The best thing I have found is find a good nephrologist. If they don’t listen to you or don’t seem knowledgeable ask to be referred to someone else. You have to have medicine to be able to tolerate the day. I am just trying to wrap my head around that I am going to have to get up put my big girl pants on and fight to make it through the day and make it enjoyable everyday for the rest of my life. I hope this helps.
I have also been diagnosed with msk and it is nice to see all these comments off people going thru the same thing. Most of my doctors haven’t been sympathetic and haven’t been much help. The doctor that was the most help was my pain specialist. Since this is life long condition that is going to keep happening over and over I recommend everyone should find one so they can manage the excruciating pain. Also taking narcotics or opiods will not help our condition. Right now I was given medicine for nerve pain and my next option is l if they don’t work is an implant in my body that will give me morphine when i press a button. He also says I could be a candidate for medical Marijuana but I’m not really crazy about that idea. I hope some of this information helps because I’ve already spent thousands of dollars in doctors who can’t really do anything except tell me I have sponge kidneys and just drink a gallon of water a day. Don’t waste your time and money by going to the er. In fact even tho I have 5 doctors technically, I think I only need my primary and pain specialist. Your primary can test for infection and prescribe antibiotics. Your pain specialist will give you options on how to deal with the pain. I hope some of the information helps. Anyone who has constant pain like I do should find a pain specialist in your area ASAP. Go get your life back.
I have recently been diagnosed with msk and have had non stop pain for a couple years now and went through a rough patch where I was bed ridden for a couple months. I finally got to see a pain management doc and he prescribed me a synthetic cannabis pill called Nabilone tho I think it may be called something in the states. 1 mg a day before I go to bed has increased my quality of life ten fold. The pain is almost gone just small pain once in a while that doesn’t last more than a couple mins. Just a thought since your doc is suggesting pot. Just wanted to let you know it’s working wonders for me. Good luck finding what works for you 🙂
I was diagnosed with MSK, Nephrocalcinosis, and Randalls Plaque over the past 3 years. I too get the you shouldn’t have pain from most doctors I’ve seen. Almost a year ago I met a new urologist that did several procedures (“the works”) cleaning out both kidneys. It did help for several months , my daily unbearable pain went to virtually non existent in comparison to before surgeries. After about 6 months of low pain and some days mostly pain free it started becoming more prevalent again. 10 months since my first surgery and the pain is back to full force and non stop. I’ve tried several homeopathic remedies along with OCT and prescription drugs, nothing seems to last. After reading several articles that most drs need to read, I am looking into possible pain management, have any of you taken this route and if so was it successful to any degree.
I actually have a success story to share. I was sent for an ultrasound 3 years ago after experiencing pain under my rib cage. My primary doctor suspected ovarian cysts. During the ultrasound, I remembered that the tech had a really weird look on her face and asked if I ever had trouble walking. At the time I thought it was a very strange question. The same day I get a call from my primary care doctor telling me to call the urologist immediately. I got an appointment the next day. I was in the waiting room when the urologist came in shaking his head. He said there was no way I should be able to stand up straight with this many stones in my kidneys. Now the ultrasound tech ‘s question made sense. We ended up scheduling a uroscopy and subsequent stent (AKA torture device. ) After the procedure, I still had 19 stones in one kidney and 11 in the other. But they were smaller so hopefully nature would take it’s course. I was told this was a condition that I would have to deal with for life and the urological said he would prescribe percoset whenever I needed. After researching. I decided to try lemon essential oils to try to prevent formation of stones. I use it internally everyday. Fast forward to last week and my appoint with the urologist. To his surprise, I had ZERO stones!!!!!!! I told him about the oils and he said urologists are starting to research essential oils as a treatment for MSK. my life has been changed! If anyone would like more info, please feel free to contact me. I am not trying to make money. I think I would get paid 50¢ If anyone orders:) I am also willing to send out samples (I guess the 50¢ would help cover that!) my website is http://mydoterra.com/teachermommy. As my website states, I am a teacher (special educator) and mother to 7 kids. I use oils everyday with my own kids!
Hi Christy, I have today been diagnosed with MSK I couldn’t get the Doctor to explain to me why I got it or how!
He seemed to have tunnel vision and didn’t listen to me. I have since arranged to see another specialist in a weeks time.
I do Reiki healing and follow a good diet I do not over indulge in anything in life and have always been healthy until I reached my 50’s. Now my health is suffering my immune system is not good and I keep getting infections first in the water works and then straight to my chest. This leaves me with no energy and a bad cough. I have Reiki once a week and use homeopathy treatments, I drink herbal tea’s and make my own remedies, I am very interested in learning more about the Lemon Essential Oil treatment. I want to get rid of the stones before I see any more doctors. Hope you can advise me you are the first person I have asked so far. Thanks Liz
I was diagnosed with MSK about 8 years ago. I am a stone former. I have gone through some really tough times with this….and also had periods where it have me a break!! Lately have had a not so good time with this. My orogist seems to think people with this should not experience pain unless you have an obstructing stone. Which leaves me feeling untreated and uncared for by my docs….I have left there in tears many times because they don’t seem to even want to understand. All they can see is black and white….either you have an obstructing stone…or not. Going to try a nephrologist next month and see if they have a better understanding of this disease and hopefully be able to help me control the daily pain that I feel at times. It affects your life….the people around you….your family.
Theresa…Having a urologist say that you should not be having pain without a problem stone is one of the most common problem people with MSK face when dealing with urologists. There is pain..stone or not…end of story. There are many of us who can attest to this and I am one of them.
If you can, find a urologist who understands and helps you with the pain.
Funny thing is I went to a nephrologist and they told me that certainly the stones on my kidneys can be causing pain….and that’s why I always have blood in my urine. BUT….since my kidneys are functioning properly….I would need to see my urologist for the pain….and my urologist says there should be no pain unless a stone is on the move. I feel like I’m in a pinball machine being bounced back and forth from doc to doc trying to figure this out. I did switch from the urologist that I have seen for 5 years to his partner….but unfortunately he feels the same….there should be no pain. So so frustrating!!!
Hello all. I have been diagnosed with MSK and have had severe back pain in my thoracic area for about 8 years now. I’ve never had a stone yet. I was curious where do you all feel your pain at? I’m 28 years old .
Hey Dave,
I have pain regardless if I have stones present or not. Some good days, some bad days…but pain everyday.
Location of my pain is backside lower flank either side…above hips and below ribcage (if that helps).
Msk is very hard to deal times the pain is sever
Alot of dr are not familiar with it
Hi! I just got diagnosed with MSK back in February of this year. I am a 17 year old female with no other family history of MSK. I am an athlete and received my first symptoms of MSK an hour after a soccer game where I had taken a pretty strong hit to my back/kidney region, all of a sudden I was collapsed while talking to my mom screaming in pain. She rushed me to the hospital where they found blood in my urine and did a CT scan on me. The doctor had never seen anything like it when they got my scans back. He came in the room panicked and told my family and I that I had at least 50 kidney stones in my kidneys. I was later discharged from the hospital that same night and got a referral to go see a urologist. He then read my medical history and reviewed my scans and told me I had Medullary Sponge Kidney Disease and there was “nothing he or I could do about it.” So since then I have been back to the emergency room at least 5-7 times. each time I go is the same thing. They get my pain under control, tell me I’m fine and that my levels are fine. And that is probably “just back pain.” The pain I experience is excruciating as I’m sure those of you with MSK already know, but the weird thing is that I have never passed a single kidney stone I just feel this excruciating pain that starts in my kidneys and makes its way to the front. I have changed my diet, and drink plenty of water.
If anyone can help or has any tips for me it would be greatly appreciated since my doctors don’t even know what’s going on. Thank you
My wife is 37 years old and has been dealing with this since she was 18 but she passes multiple stones at a time , several times a year and has had 4 lithotripsies to break up stones to large to pass. Unfortunately she is told the same things as all the other stories in here. Basically they give you pain meds and send you home. There is a post a couple above yours that talks about lemon oil helping. I would keep researching and looking into natural cures cause the doctors don’t seem interested in curing anything just masking the pain and turning you into A LIFETIME pill popper.
I am going through the same thing right now and don’t know what to do I am in so much pain and throwing up and they tell me I should not be in pain cause they are too big to move they are stuck I have never been this sick in my life
I was diagnosed with MSK about 6 years ago (at age 23) when I had my first painful infection. I get an annual ultrasound and take Tamsulosin to widen my tubes when I feel a stone forming. Just had the second major infection in 6 years, so not too bad. My stones are not diet/calcium based so none of the nutritional stuff helps me! I just drink huge amounts of water, even through the night. That seems to make a big difference.
I saw my Urologist today, although MSK was discussed, he didn’t want to lable it as such yet. I’m am 44 year old female, who passed my first stone when pregnant a 34. My next insident was 3 months ago (10 years later) when I had started passing a stone from my right, and then a week later started passing one on my left. Three months later I’m having pain on my left again. I did have an x-ray and there is one on the left but “very low” in the kidney. I am having pain, the same pain that started 3 months ago. I’m scared of what will happen next, although the x-ray says its no where near its descent. So, what am I feeling? Why am I in pain?
my mom was diagnosed with this disease in her late 20’s. she has is now passing very large stones 2-3 times a week with a great deal of pain. I am afraid I have the same problem as I have had three kidney stones all ready and I nearing the age of 30 myself. I wonder if it’s possible to see the cysts on a reg ct scan with no contrast? I have reassured myself that I don’t have the disease because it would have been discovered by this point but now I’m wandering if I do.
Wish you all the best in you journey with pain control
although I was told that msk was only found in the 30-40 age group I first passed a stone at 16 after endless tests because this was happening every few months or even weeks sometimes I had no diagnosis until I was in my 30’s. thankfully the rate I was passing them seemed to slow down for what ever reason, In my 40’s and 50’s I can pass the very small stones with a few hours of not to bad pain and no vomiting I’m due for a ct on sat after quite a lot of years with no monitoring so I’ll share the outcome once I get the results hang in there everyone I’ve had msk for nearly 40 years and still going strong. voltorol suppository 100mg are fantastic I was able to stand upright within 10 mins
I want to thank everyone for all the information. My 14 year old daughter was just diagnosed with MSK and has been have severe pain for the last 3 months. We are still trying to figure out a good pain management other than going to ER a lot for iv medication. Any help I can get is appreciated.
Whatever her stones consist of like mine are calcium salt sugar and potassium just cut back on it have her eat a lot of vegetables and chicken and fish warm baths help and I would suggest a pain medication such as naproxen or a muscle relaxer
I am 66yrs young & was also born with a medullary kidney, diagnosed in my thirties. I was on a low calcium diet for years to help prevent stone formation. Please try to obtain this diet sheet. I have forgotten most of it now.There are some fruits & veg that should NOT be eaten. Spinach, broccoli among them! also foods that you wouldn’t suspect to be harmful. Anything made with flour is one I recall & all dairy except cream for some strange reason. Take care