The Diagnostic Dilemma of Medullary Sponge Kidney


Diagnosis of MSK is Increasing

Urologists and nephrologists specializing in the treatment of kidney stones seem to encounter patients with medullary sponge kidney (MSK) far more often than one would predict given the fact that this disease affects less than 0.5-1% of the general population.

One potential explanation is the high frequency of stones in such patients, nearly 70%. Stones call attention to themselves. Even so, referrals for MSK seem to be occurring at ever increasing rates, out of proportion to the prevalence of the disease.

Another explanation is that we can see more because of dramatic improvements in CT scanners and endoscopic equipment we use for stone removal.

Latest generation, thin slice CT scans can isolate tiny stones as small as a millimeter in size.  Meanwhile, modern flexible endoscopes not only visualize every crevice of the renal collecting system but are able to do so in high definition. Consequently we can identify previously unrecognized variations in the appearance of stone forming kidneys, of particular interest here nephrocalcinosis on CT and tubular plugging on endoscopy.

But diagnostic capabilities may be progressing faster than our ability to comprehend the significance of what we see. As a result, one can misclassify patients as having MSK when the correct diagnosis is another more common finding such as nephrocalcinosis or tubule plugging.

For example, a urological surgeon performing ureteroscopy with a modern high resolution digital instrument notices “hundreds of tiny stones,”, “abnormal papillary architecture” or “stones located under the urothelium” and proceeds to label the patient with MSK. Or, a patient with urologic symptoms such as renal colic, recurrent urinary tract infections, or microhematuria has a CT scan showing ‘nephrocalcinosis’ and is labeled as having MSK.

In both instances, the true likelihood of actually having MSK is, by a recent small study, only 4/15 (25%), but physicians are not generally aware of the differences between MSK, nephrocalcinosis, and tubule plugging because these are new areas of knowledge which have not been proliferated widely.

This article is one way we hope to make the diagnosis of MSK, a unique and complex disorder of renal development, clearer for physicians and their patients.

What Is MSK?

Our collective understanding regarding the development and pathophysiology of MSK is rather sparse even though G. Lenarduzzi first described it in 1939.

The Cause of MSK

The exact mechanisms that produce MSK are unknown. It is believed to be a result of abnormal renal development in utero. More specifically, scientists believe the ureteric bud – which will give rise to the ureters – interacts abnormally with the metanephric blastema tissue in the embryo which will produce much of the kidney substance.

There appears to be a genetic component to the disease. Recent evidence is that about half of patients diagnosed with MSK will have at least one relative with some degree of similar affliction. This kind of familial clustering can suggest an autosomal dominant gene expression or the actions of multiple genes giving that impression. The review of the above link is an excellent recent treatment of the matter of development and genetics which we highly recommend.

The Anatomy of MSK

MSK, as its name implies, is characterized by sponge like, cavitary regions within one or both kidneys (Figure 1).


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Figure 1 – A normal appearing kidney (left) compared to MSK kidney (right).

More specifically, the dilations occur in the inner medullary (precalyceal) collecting ducts. These collecting ducts are the terminal region of the nephrons, the individual functional units of the kidney.The inner medullary collecting ducts (IMCD) have the job of delivering urine to progressively larger ducts (ducts of Bellini) that deliver the final urine out of the renal papilla into the minor calyces (Figure 2) which connect into the renal pelvis and thence into the ureter to the bladder.

Renal Anatomy copy

One way to think of the IMCD is as a collection of streams merging and forming a river (duct of Bellini) which leads to a delta (minor calyx) and then a lake (major calyx) and ultimately an ocean (renal pelvis) (Figure 2).

Figure 2 – Anatomic depiction of kidney and collecting system

The IMCDs are not visualized in Figure 2 but if you scan down to Figure 3 just below several human nephrons which were microdissected from an MSK kidney show what is really wrong with them.

In MSK, some IMCD are dilated markedly and have outpouchings (cysts): blind sacs which begin at the IMCD lumen but go nowhere – like a hallway someone walled off at one end. It is at the ends of these hallways one finds the stones, free floating and probably trouble. Other IMCD are not dilated and do not have cystic outpouchings.

MSK NephronFigure 3 Microdissection of complete nephrons from MSK. Irregular dilation of the IMCD is present. Cystic outpouchings are present, of varying sizes. The blind ends are obvious. It is in these cysts that tiny stones are found.

Quite apart from the IMCD dilatation and cysts, the kidneys of MSK have two other abnormalities which mark it as a specific disease. Those IMCD which are not dilated nor cystic have a multilayered epithelial lining, whereas a normal undilated IMCD lining is one cell layer thick. The interstitial cells of the renal papillum – the cells between the tubules and vessels – are more numerous than in normal kidneys, and have an immature appearance much like is seen in fetal kidneys.

Why Stones Form in MSK

Elsewhere on this site we have pointed out that supersaturation is a force, a source of energy directed at forming solid phases such as stone crystals. The kinetic retardants in urine, which include citrate, stave off crystallization but can never prevent it: A supersaturated solution will eventually collapse into two phases, crystals and a residual solution precisely at the solubility point, devoid of extra free energy.

The stagnant flow as a result of the dilated MSK IMCD, and particularly the static conditions in the fluid filled blind ended cysts, are the probable reason those innumerable tiny stones form which end up packing the ‘sponges’ with masses of crystals. How MSK patients produce larger stones, big enough to block the ureter is unknown. It is not true that MSK patients have remarkably high urine supersaturations or other physiologic abnormalities such as hypercalciuria and hypocitraturia. Possibly the tiny stones somehow leave their cysts and enter the urine where they act as nucleation centers. 

Other Associations

Other common associations with MSK include urinary tract infection, microscopic and gross hematuria, and impaired renal function. Perhaps the stagnant flow in dilated IMCD and particularly in cysts, predisposes to infection. But since the papillae are abnormal in other ways it seems likely that these intrinsic abnormalities themselves must be clinically important, and more work needs to be done on the problem. 

Making the Diagnosis of MSK

Of course, when we speak of what is wrong in the MSK kidneys, and how it affects people, we base everything on knowing that a given patient has MSK. If you have a kidney from such a patient and can show the dilated IMCD, the cysts, the tri-layered IMCD epithelium, and abnormal interstitial cells, diagnosis is certain. But what can we do when we are dealing with a patient?

Radiological Studies

Intravenous Urography

Historically, the diagnosis of MSK has been made on intravenous urography (IVU). Radiographic contrast is administered and x-rays of the kidneys, ureter, and bladder are taken periodically as the contrast is absorbed and later excreted by the kidneys through the urinary tract.

The delayed phase image is essential for diagnosis. This is when contrast material fills the masses of dilated IMCD and cysts which make up the sponge.

The masses of dilated IMCD filled with contrast material produce a characteristic ‘papillary blush’ which appears like flames on the outer edges of the papillae. When particularly large it can mimic a bouquet of flowers peripheral to the collecting system.

IVP Medullary Sponge

Figure  4 – IVU image of medullary sponge kidney. The arrow designates the papillary blush in the mass of dilated IMCD space.

CT Scans and Other Imaging

Over the past 10-15 years, noncontrast CT scans have replaced IVU as the imaging method of choice for stone formers. While these scans are more sensitive in detecting small stones, the lack of contrast limits the ability to accurately diagnose MSK and has raised concerns regarding the potential for under-diagnosis of this disease.

CT does have the capability of making this diagnosis when contrast is given and CT urography is performed; though this is not used as a first line choice for stone imaging and is generally reserved for specific indications such as hematuria and concern for urinary tract injuries.

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Figure 5 – Demonstration of papillary blush (small arrows) on CT urography for patient with medullary sponge kidney.

Use of other imaging modalities have been investigated as well though they have proven suboptimal in their diagnostic capabilities. Ultrasound has poor sensitivity to detect dilation of the collecting ducts and MRI has the potential to delineate detailed renal anatomy but can not detect stones or calcification.

High Definition Endoscopy

State of the art high definition endoscopes have allowed investigators to make observations at the time of renal endoscopy correlating the appearance of the renal papillae and collecting system to specific types of diseases and metabolic derangements associated with stone formation. Because endoscopy is now being performed as a common and often preferred way to manage stones, this kind of detailed imaging of kidneys will be available more and more in the course of regular patient care and permit physicians to diagnose the exact kinds of disorders in the kidneys of stone formers. 

Medullary sponge kidney in particular has an entirely unique appearance unlike any other type of stone related disease, making endoscopy a particularly exacting diagnostic procedure. Detailed anatomic descriptions from twelve such patients each with evidence of MSK on biopsy were recently described by Evan et al.

The Papillary Malformations Seen Via Endoscopy

In stone formers the papillae often appear abnormal, a concept that merits its own post and which we can only briefly summarize here.


The renal Screen Shot 2015-06-11 at 9.37.45 PMpapilla is the anatomic subunit of the kidney where the IMCD merge together into the terminal Bellini ducts which empty into the minor calyx. Normally, it should have the appearance of a smooth walled mound or mountain without much if any calcification (plaque) along its surface. The link is to a detailed post about plaque by Dr Andrew Evan.

Figure 6 – Healthy appearing renal papilla with a minimal amount of Randall’s plaque (arrowhead).

Ductal Plugging

Another common abnormality identified in many papillae at the time of endoscopy are plugged ducts. The physiologic mechanisms for this process are currently unclear; Screen Shot 2015-06-07 at 9.48.55 PMhowever, we believe it is a reflection of injury that begins a potentially disastrous chain of events for stone formers.

Figure 7 – Abnormal papilla in a patient with severe ductal plugging. Yellow mineral deposits (arrows) can be seen protruding from dilated ducts of Bellini.

Our present assumptions are that once crystals begin to form within a duct, they damage the lining cells and the duct loses its ability to make acidic urine. This in turn raises the local pH level and leads to the growth of more calcium phosphate mineral deposits which are favored by high pH.

Unclear is what begins this process. Since these ducts contain fluid which is very close in composition to the final urine, we suspect it is high supersaturation with respect to calcium phosphate. This occurs in those patients with both high urine calcium excretions (hypercalciuria) and higher urine pH levels – above 6.2. Such patients often form stones high in calcium phosphate composition and plugging is strongly associated with formation of such stones.

The mineral deposits subsequently grow and we believe can even act as a nidus for stone formation. The corresponding papillae can look markedly abnormal and the dilated ducts are easily evident. Remnant dilated ducts left behind after the mineral is spit out or surgically removed (Figure 8) show dilation without the mineral plug.

Screen Shot 2015-06-07 at 9.48.20 PMFigure 8 – Evidence of abnormally dilated ducts (arrowheads) at the surface of a papilla.


The findings in MSK are comparable in some ways to ductal plugging; however, rather than the papillae having one or several abnormally dilated ducts, the entirety of the papillum is markedly abnormal.

Therefore MSK and plugging type papillae look remarkably different.

The MSK papillae are excessively round, enlarged, and billowy (Figure 9). 

MSK two plot from our MSSFigure 9 – A papillum in a patient with medullary sponge kidney. The papillae are rounded and enlarged with a billowy appearance. The papillary tips are blunted. No other kind of papillary disease is known to present this appearance which is therefore pathognomonic of MSK. Panel a shows dilated Bellini duct openings at asterisk; the arrows show yellow plaque – plugging of IMCD completely separate from the stones which fill dilated IMCD, the arrowheads show traces of white plaque. Panel b shows the billowy papillum with a blunted tip surrounded by calyceal stones.

In the majority of such cases, these changes are seen diffusely throughout each kidney, though segmental sponge findings are present in a minority of patients.

The differences in appearance are well demonstrated in the post by Dr. Evan and the following video.  With ductal plugging the bulk architecture of the papilla is intact though many ductal plugs are seen.  Note the way the ductal plugs are adherent to the lumen.

In MSK on the other hand, the papillary architecture has and unique, billowy appearance with massively dilated ducts and freely mobile stones within them.  The following video is from a patient with MSK.  A duct of Bellini is massively dilated and numerous tiny stones which are free floating pass out of it during the visualization as the opening is enlarged with a laser. You can see stones bouncing within the duct because of movement of the irrigation fluid.

Clearly neither papillum is “normal” and one can imagine the tendency to misdiagnose a plugging patient as a MSK patient unless the two patterns are clearly in one’s mind.

The ductal deposits themselves are an important clue. In all plugging diseases but cystinuria ductal mineral plugs are fixed within the ducts because the crystals adhere to the lining cells and often destroy them. As the lining cells are destroyed crystals fix themselves to the basement membranes, the collagen shell on which the lining cells once grew. Inflammation follows such injury with scarring and loss of the tubule segments. Deposits therefore never float free from a dilated duct except in cystinuria and in MSK. Cystinuria is usually diagnosed directly from stone analysis and urine cystine screening.

Perhaps because the tiny stones in MSK do not attach to the epithelium of IMCD there is no evidence of cell injury or inflammation, in marked contrast to all of the plugging diseases. Even in cystinuria injury occurs, not from the free floating distal cystine plugs but from calcium phosphate plugs which form in the IMCD.

Stones may cause pain in MSK despite the lack of ureteral obstruction and inflammation and cell injury. Possibly distention of the dilated ducts by masses of tiny stones could be a factor. Consequently, laser unroofing has been postulated as a potential treatment option in both disease states: those with plugging and MSK.

The video may not make it easy for everyone to visualize the stones and cavities of MSK. The 4 still pictures below show much the same thing for clarity.

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Figure 10 (a-d) – Example of laser unroofing of sponge cavity full of freely floating stones. The massively dilated MSK bellini ducts are seen in Panel a; the white speckles at 9 o’clock are tiny stones in dilated IMCD or cysts. Panel b shows a holmium laser fiber being used to open dilated IMCD or cysts.  Panel c shows masses of tiny stones free in dilated IMCD or cysts which float out as the surface is incised with the laser. In panel d, the remnant sponge cavity can be seen now free of stones.

Nephrocalcinosis and MSK

Strictly speaking, nephrocalcinosis refers to the presence of calcium deposits in the kidney tissue. Of course, this includes ductal plugging and the masses of tiny micro – stones inside cavities produced by numerous dilated IMCD in MSK. However, the word ‘nephrocalcinosis’ is also used as a radiological diagnosis which is far less specific.

Limitations of Radiology

When radiologists speak of nephrocalcinosis they can mean large numbers of calcifications within the collecting system or kidney tissue, because they cannot differentiate reliably between tissue calcifications and stones. When urologists speak of nephrocalcinosis seen during high resolution endoscopy they can specify if it refers to tissue calcifications, stones, or both, and will reserve the term for that component arising from tissue calcifications.

MSK is one of several disease states that is commonly associated with extensive nephrocalcinosis observed by radiologists. Other common conditions are stones caused by renal tubular acidosis and primary hyperparathyroidism. Calcium phosphate stone formers without any systemic disease can also produce sufficient combinations of ductal plugging and stones that nephrocalcinosis is diagnosed radiologically.

In a recent study of 67 idiopathic calcium stone forming patients undergoing percutaneous nephrolithotomy, rates of nephrocalcinosis ranged from 18-71% depending on the type of associated stone.

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Figure 11– X-ray example of patient with MSK affecting the left kidney. Extensive nephrocalcinosis is seen.

Because radiographs cannot reliably distinguish tissue calcifications from stones adjacent to tissues, the very word ‘nephrocalcinosis’ needs to be re-defined. 

In particular, the situation with respect to diagnosis of MSK has worsened as radiological techniques have changes. When IVU was the first line imaging modality for stones, contrast enhanced urographic phase imaging gave additional clues to MSK – the papillary blush illustrated in a prior section.

Nowadays since a single non-contrast CT series is all that is typically performed, the papillary blush effect cannot be seen, and diagnosis of MSK must rely more on the presence and pattern of nephrocalcinosis itself, which is not very specific to MSK. This means that the diagnosis of MSK by radiology has become unreliable.

The Power of Endoscopy

Differentiation of Nephrocalcinosis from Stones

During endoscopic procedures, stones and tissue calcifications can be directly identified and told apart. For example, in the images below, some of the calcifications were identified as stones. Others were tissue calcium deposits such as plugging or extensive plaque.

This has led to the notion that kidneys should only be labeled as having nephrocalcinosis once confirmed visually on endoscopy.

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Figure 12 (A-C) – Evidence of increasing degrees of nephrocalcinosis confirmed visually at the time of percutaneous nephrolithotomy. In each image a nephrostomy tube (not calcification) is depicted by an arrow. The remainder of the images have increasing degrees of calcification (bright white) within the kidney. Ignoring the nephrostomy tube, one can clearly appreciate a minimal but very present degree of accessory brightness (calcification) in panel A, a moderate amount in panel B and a severe amount in panel C.

Diagnosis of MSK

Of course, all of the problems of nephrocalcinosis are compounded when it comes to MSK. Stones and tissue mineral are easily mistaken for one another in CT scans, and ‘MSK’ affixed as a label to patients who do not have it. Endoscopy will easily identify the remarkably abnormal papillary shapes and dilated sponges, so MSK patients are properly diagnosed.

Tips for diagnosing MSK

1) Confirmation with flexible renal endoscopy can make a definitive diagnosis in patients suspected to have MSK and can be diagnostic as well as potentially therapeutic in terms of stone removal.

2) Consider urographic phase imaging either with IVU or CTU to confirm MSK suspicion in cases where renal endoscopy is not clinically indicated.

3) MSK should not be confused with ductal plugging as these are distinct clinical entities.

4) Nephrocalcinosis is more common than previously appreciated and does not necessarily indicate systemic disease or the specific developmental disorder of MSK.

A Final Word on Treatment

MSK is a true disease and deserves more attention and research efforts to help clarify its etiology and optimize treatment strategies. Because diagnosis by CT scanning is unreliable, the condition is easily overdiagnosed, a problem which leads to many kinds of confusion, clinical and research.

Alternative diagnoses to MSK, such as severe ductal plugging, are not benign and require their own treatment in order to prevent progression. Very often patients with plugging have multiple and severe abnormalities of urine chemistry which can be treated with diet and medications. Proper classification of patients is therefore especially important as different disease states may require unique treatment strategies.

In the event that an accurate MSK diagnosis is made, the tendency to give up on treatment and surrender to the inherent challenges of the disease should be avoided. In fact, these are the patients where metabolic evaluations and attempts at stone prevention are most critical.

Moreover, just because many of these patients tend to have extensive nephrocalcinosis on imaging does not mean they can’t form symptomatic stones in the collecting system as well. In fact, for such patients the clinical history is especially important as visualizing new stones in the setting of extensive nephrocalcinosis can be quite challenging.

Oftentimes when there is a high index of suspicion based on clinical factors, the optimal approach is ureteroscopy as this can be both diagnostic and therapeutic.

That being said, realistic surgical goals should be established. Clearing all stones from such kidneys is rarely feasible, though unroofing those pockets closest to the collecting system or largest on CT imaging offers a good place to start.

MSK is a complex and poorly understood disease that can manifest uniquely from patient to patient. In that respect what works for one person may not be appropriate for another and treatment strategies should thus be organized on a patient to patient basis.

429 Responses to “The Diagnostic Dilemma of Medullary Sponge Kidney”

  1. Jessica

    Hello, I really hope that you get this message as I am in desperate need of some help. My doctor does not take this condition seriously and refuses to provide me any medication that is adequate to treat the pain. She does not believe that I am experiencing pain. I just went through a 14 week experience where I called her weekly to tell her that something was wrong, that something was different and not right and got no Assistance until I ended up in the hospital, septic with a fever of 107 and a heart rate of 365 with a blood pressure of 80/40, I almost lost my life! She still refuses to take it seriously! When I tried to talk to her about it today she told me that she had other patients to deal with and disconnected the call. I really need someone who’s going to take this seriously! This is affecting my daily life and the pain is making it unable for me to maintain a normal job or social life. I just went through a 14 week experience where I called her weekly to tell her that something was wrong, that something was different and not right and got no assistance until I ended up in the hospital, septic with a fever of 107 and a heart rate of 365 with a blood pressure of 80/40, I almost lost my life! She still refuses to take it seriously! When I tried to talk to her about it today she told me that she had other patients to deal with and disconnected the car. I really need someone who’s going to take this seriously! This is affecting my daily life and the pain is making it unable for me to maintain a normal job or social life. Are there any good doctors in Atlantic Canada that specialize in this or have knowledge of this disease? Thank you in advance!

  2. Giana

    I was diagnosed with bilateral MSK in 2003. I have passed multiple stones over the years. Do you have any recommendations for a “stone specialist” in Buffalo NY? Rochester, NY and Cleveland would work as well.
    Thank you!

  3. Ann

    I was diagnosed with MSK 25 years ago. I have passed many large stones on my own. I am seeing a new Urologist and he has suggested PCNL to remove all my stone. Is that a successful treatment for MSK?

    • Fredric L Coe, MD

      Hi Ann, If you really have MSK there will be a lot of stones and they will be removed by opening the sponge cavities. Usually that is done because of severe pain. PCNL is usually because of a very large stone burden or very large stones, which I presume you have. Knowing nothing more about you I cannot say more that would be useful. Regards, Fred Coe

  4. Mark C McDonald

    I am a 61 year old male, and I passed my first kidney stone when I was 8 yrs old (1966). I did not have a diagnosis of MSK until I was 28. I have passed many hundreds of pieces of stones. Is there any practitioner in the Atlanta area that specializes in MSK? I have a decent Urologist, Nephrologist, and Pain Management Specialist. Even though they try to help, their focus is on the run of the mill patients, and I am an oddity. If you could help i would greatly appreciate it.
    Regards – Mark McDonald.

    • Fredric L Coe, MD

      Hi Mark, Emory is your best bet. I went through the faculty in Urology and did not recognize any names, but I would call and ask who specializes in stones. In renal medicine, I noticed Dr Robert Hoover who is not a stone person but a friend of mine and he might point you in the right direction. Regards, Fred Coe

  5. Amy Yocom

    Dear Dr. Coe, Thank you for the fine article and your kindness in offering guidance! I would like to give a little synopsis of my diagnosis with MSK so I can know how to proceed with what I am dealing with at present. I am 56 years old, and about 15 years ago I had my first kidney stone that had to be removed by basket retrieval. It was 6mm and determined to be calcium oxalate. About 5 years later, I passed another on my own. I began to have a nagging pain on my right side under my ribs that felt like it continued down to my groin. I thought it was another stone trying to pass, but after finally getting US and CT scan, I was told I indeed had a stone but it wasn’t moving so wouldn’t cause pain, but I was told I had MSK. I dealt with the uncomfortable pain for a year. I moved and went to another doctor whom ordered a CT with contrast, and again I was told I had MSK. Finally, the stone began moving and became obstructing and was again removed by basket retrieval. While there, the urologist did a clean out of my right kidney, confirming a diagnosis of MSK. I felt better for a while, but after a couple of years I again have the nagging ache on the right. I used to say if you cut me in half my left side would be perfect. Well, recently my left side started, and I felt like I had a UTI. Went to gynecologist and had blood in urine, put on Cipro, culture came back negative. Kept having pain and was sent for US…5mm stone in left, 3mm in right. Was told I could opt for lithotripsy because I was going out of town to help move my elderly in-laws and was afraid I would pass a stone while gone. I decided to wait and try to deal with it. The UTI feeling came back and worsened so that I had to stop at ER on the way home (July 4th) as I wanted to make sure I was not getting an infection. Same thing-blood in urine. I was prescribed Toradol to help with inflammation till I got home, but I only took one as I am afraid of side effects. Here is my question-should I arrange to have the stones removed? If the pain is going to be a constant feeling of starting a UTI, I don’t know how long I can handle it-(it is a feeling of fullness in kidney with a sensation of a clothespin on my lower ureter; no burning on urination but a need to go often because of the sensation). Perhaps I should try to find a doctor that is familiar with MSK? I live in Fairhope, Alabama, but would be willing to travel if not too distant. Thank you for any guidance you can give.
    Sincerely, Amy

  6. Loretta

    Hi I was diagnosed with msk 6 years ago but started when I was 16(now 27). I deal with constant pain with fever and nausea with UTI’s every 3-6months. Along with both kidneys being infected. After reading some of the comments I’ve never had to have any surgeries thus far, and I feel now lucky for that. I was wondering if you have any recommendations for doctors here in Arizona. I have kinda given up hope and I am tired of the pain. If you have any advice that would be great. I hope to here back thank you for your time.

  7. Carole Murphy

    I have been dealing with MSK for over 30 years now. After 24 operations and passing hundreds of stones, I figured out how to stop making stones about 8 years ago, (with huge change in diet and bifido bacterium lactis). My difficulty now is that I had an undiagnosed kidney infection that infected the stones and after many too many antibiotics, I how have candida in those stones. Two weeks ago I had my 4th operation to try to remove the infected stones and it was pretty successful. Alas, I still have the Candida infection in the kidneys. Do you have any suggestions? Who are the country’s leading doctors with medullary sponge kidneys? Do you recommend any hospital in particular? My doctor has been great but at this point, he is not solving this issue and I have had fevers, exhaustion and pain for 3 and 1/2 years now.

    • Fredric L Coe, MD

      Hi Carole, If I knew where you lived I could try to identify a place. Perhaps you might want to email me and I can offer suggestions Fred

  8. Regina

    I was diagnosed with bilateral MSK about 15 years ago (around 22 yrs old). Until 2018 I hadn’t had any major complications except for constant UTI’s and sporadic pain (that’s tolerable). However, starting last year, pain (more in my left kidney) has increased significantly and occurs more often. I’ve had two lithotripsy surgeries (the last one was just a few days ago).
    When I explain to my Urologist how much pain im in I feel like im not being heard. I cannot tell you how many times I’ve been told, “it’s in your head” or “you shouldn’t be experiencing that much pain”.
    My question is this- How is treating a patient with pain that has kidney stones different than a patient that has kidney stones but also diagnosed with MSK (or is there a difference). Do you have any advice?
    Also, do you have any recommendations for a good Doctor or Medical facility in California?

  9. Renee Soderquist

    I have a question, what types of pharmaceutical therapies have been successful in reducing the amt of calcium excreted into the urine (hypercalciuria)?
    The amt has been increasing, and no therapy we have tried appears to be helping.

    thank you

  10. Aislinn

    (This is rather breathy, and I apologize)I have been searching everywhere (literally), to try and find anyone that might possibly have any answers, resources, or anything really.
    Backstory-my issues started at the age of 16 (now 34), and I was not diagnosed until I was 27. For me, it started with a cyst on the left kidney, a kidney stone coming from the right kidney, and a cyst that had burst on my right ovary. In the 18 years since I have had surgery (both lithotripsy and Ureteroscopy) approximately 5 times; and around maybe 4 or five kidney infections between 16 and 33. Last year at the age of 33, I experienced my first complication; I almost died from Urosepsis.
    Before the surgery that caused my Urosepsis, I had a count of about 40 stones between my two kidneys; he did clear the two I was moving and proceeded to clear my left kidney-and I got septic 36 hours later. (I know this is a lot and you’re probably wondering why I’m so winded-I’ll get to it). Fast forward to today, exactly one year from my two week stay in the hospital, I have had SIX Kidney infections; and recently was told by one doctor that I was moving another stone. Because of the COVID-19 pandemic, I had to fight to get into the urologist; (the urgent care doctor did start the normal treatment for a stone) the night before they called to set up the appointment I started showing signs of Urosepsis again (mainly the horrific pain). They scheduled CT, and when I went to the Urologist they told me there was nothing they could treat; even though I explained to them the pain. After the appointment, my urine was straight blood, my legs, hands, and feet were swollen; and I have a multitude of other symptoms as well-and I can’t get anyone to put any pieces together but me. Frankly, I’m getting tired of fighting; and I have a new found respect for people I work with that have chronic illness.
    My question with all of this is-is there any chance this has progressed into something more than just MSK; and is there anyone in Iowa that you could recommend?
    I know that you cannot diagnose or anything of that nature; but I am so desperate for help from ANYONE. None of my doctors are listening to me (except my Ophthalmologist); I need resources, someone who can help me-literally, anything. Is this MSK or something else; or has it progressed? I’m tired of not being able to do anything because I don’t have the energy-or I am just in too much pain.

    Thank you, for listening (should you make it through this lol).

    • Fredric L Coe

      Hi Aislinn, Given so many stones, you may have MSK or just massive calcium accumulations in your kidneys. That you have had so many stones is not so rare as I have reported many such patients. You have been infected because of procedures – almost inevitable when one has so many. If you were septic, physicians would have been able to determine it: Sepsis is more life threatening than Covid by far! The best resource in Iowa is the medical school. It is a very fine one. I would make inquiry there for kidney stone expertise. You will have to wait, but quite possibly they will do your initial evaluation via telemedicine – we are beginning to do that here. Regards, Fred Coe

    • Carole Murphy

      Have you been tested for candida? (It’s a simple urine test but requires a request for it.) If you have had too many antibiotics, you can get it. It happened with me.


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