Category Archives: Medullary Sponge Kidney

My 17-year old daughter was diagnosed with Medullary Sponge Kidney last week after an afternoon in the ER with left back pain. No kidney stone was found. She had one other episode with pain 9 months ago. Pain lasted a couple of days and she has been struggling with fatigue. She plans to major in dance next year in college. But after my research, I’m very concerned that she will not be able to pursue dance as a career with MSK. We are still waiting to see the Nephrologist. What are your thoughts on such a physically strenuous career with this diagnosis? And do you have a physician recommendation who specializes in MSK.

I cannot give medical advice without performing a complete history and physical examination. Neither I nor the National Kidney Foundation provide referrals. I suggest that you await the opinion that you get from the nephrology referral. You can learn more … Continue reading

Posted in Ask the Doctor, Kidney-Related Health Questions, Medullary Sponge Kidney, Nephrologist

Is enlarged kidneys a symptom of CKD? I have a history of frequent UTIs, kidney stones and MSK. My last follow up ultrasound noted enlarged kidneys. Young female 4”11 115lbs and they measured 12.2 cm and 12.4 cm.

The ultrasound measurements that you mention may be normal depending on your body size. Your description of your weight and height suggests that you are a relatively small person and 12 centimeter (cm) kidneys could be modestly enlarged. Medullary sponge … Continue reading

Posted in Ask the Doctor, Chronic Kidney Disease, Kidney Stones, Kidney-Related Health Questions, Medullary Sponge Kidney

I was diagnosed with Medullary Sponge Kidney Disease when I was 28. I was full of kidney stones and even the stent put in till I could have surgery because of lack of insurance, which is still lacking because I can’t afford it, made the stent calcify in a matter of two weeks. I follow my diet plan and I reduced my salt intake. I’m so tired all the time and I can hardly sleep. I’ve increased my fluid intake majorly. I feel like I drink more than food intake. Here in the past month I’ve noticed more swelling. Severe pain when bladder is emptied. Kidneys especially the right one aches. I have no energy. Urine smells strong and sweet, its very dark and not a lot of output. I’m drinking 9 bottles of water a day and only urinate 3 times a day. I always empty my bladder before bed as instructed but now I’m waking up for the past 3 months several times to pee. I take a sip of water two hours later I wake up and I feel like my bladder and kidneys are going to explode. I pee a lot and then ache and cramp afterwards. I don’t know what to do. I don’t have the funds for medical help but I’m suffering. My family suffers cause I’m always in the bed aching all the time. Is there any assistance or advice on what I need to do or what’s going on? The only symptom I feel like I’m lacking for kidney failure, is black bile and foamy urine output. Surely I’m too young for my kidney or kidneys to be failing at 31 with just having MSK. But I feel dull aches in my kidneys and painful twinging in my bladder and ureters especially after I urinate all the time. I don’t know what to do. Frankly, I’m scared.

Medullary Sponge Kidney (MSK) can have many manifestations, including stone disease and kidney failure. You can learn about MSK at the National Institute for Diabetes, Digestive and Kidney Diseases (NIDDK) web site at: https://www.niddk.nih.gov/health-information/kidney-disease/children/medullary-sponge-kidney I am not able to make a … Continue reading

Posted in Ask the Doctor, Kidney-Related Health Questions, Medullary Sponge Kidney, Nephrologist, Urinary Tract Infection/Pyelonephritis

I’ve just been diagnosed with MSK. I had a lithotripsy about 20 years ago for multiple kidney stones but was asymptomatic until about 90 days ago when I developed chronic UTI. Ultrasound revealed a new large non-obstructive stone and I was dx’d with the MSK. No family history but my BMI is 37. I’ve rapidly gained weight over the last 6 months even though I’ve been exercising more. I would like some tips on managing this disease and staying healthy.

Medullary Sponge Kidney Disease (MSK) is a relatively rare disease that you are born with.  The National Institutes of Health has an excellent site to learn about this disease at:  https://www.niddk.nih.gov/health-information/kidney-disease/children/medullary-sponge-kidney You can also learn about this disease on our … Continue reading

Posted in Ask the Doctor, Kidney Stones, Kidney-Related Health Questions, Laboratory Testing, Medullary Sponge Kidney, Symptoms and Side Effects, Treatments, Urinary Tract Infection/Pyelonephritis

I was told by my kidney doctor that I have medullary sponge kidney and I am always in pain. I have changed my diet and have been taking the three new meds but every day when I wake up it feels like someone has to kick start my kidneys. Is it normal to feel this every day? Also I form stones very fast too.

Medullary Sponge Kidney (MSK) is a rare disorder of the kidney that is caused by small pockets forming on the kidney tubules and is often associated with excess calcium in the urine and also alterations in other constituents of the … Continue reading

Posted in Ask the Doctor, Chronic Kidney Disease, Kidney-Related Health Questions, Laboratory Testing, Medullary Sponge Kidney, Treatments

Please help me I have medullary sponge kidney. I am in pain everyday. I have kidney stones in both kidneys small ones and big ones 7, 8, 9 mm big. I have a urologist, but he won’t give me nothing for pain. What can I do? Please help. I can’t take this pain anymore.

Medullary Sponge Kidney (MSK) is a rare kidney disease that causes damage to the collecting tubules of the kidney and calcium is known to build up within these tubules.  This can result in the passage of multiple kidney stones.  Treatment … Continue reading

Posted in Ask the Doctor, Chronic Kidney Disease, Kidney-Related Health Questions, Laboratory Testing, Medullary Sponge Kidney, Treatments, Urological Issues

I have been dealing with MSK for 30 years . My kidneys have been a ongoing issue. I have had 4 surgeries for large stone removals. This year alone I’ve had 13 lithotripsies. Prior to my lithotripsies, my kidney gfr was in the 30s. Since my lithotripsies, my kidney function has dropped to gfr 25. My urologist said my condition is too complicated and can no longer help me. I’m now in stage 4 kidney failure and I’m lost on what to do. I have constant cramps in my calves at night and frequent night urination. I’m not bloated in my legs but my stomach bloats at times because of this rare condition. Most Doctors in my area can’t help me. I’m wondering if you know of any Dr in the west coast of Florida area that’s familiar with this problem and could help me.

Neither I nor the National Kidney Foundation provide referrals.  I suggest that you contact your primary care physician (PCP) in your area and ask for a referral.  You should have further testing to determine why you are passing so many … Continue reading

Posted in Ask the Doctor, Chronic Kidney Disease, Kidney-Related Health Questions, Medullary Sponge Kidney

My 12 year old daugther is suffering from nephrocalcinosis. What is this kind of sickness? What should I do to help her to recover?

Nephrocalcinosis is a disease of kidney tubules that causes calcium to deposit in the tubules of the kidney.  This disease is commonly a congenital disease (she was born with this abnormality) but can also be caused by such things as … Continue reading

Posted in Ask the Doctor, Chronic Kidney Disease, Kidney Stones, Kidney-Related Health Questions, Laboratory Testing, Medullary Sponge Kidney, Treatments

Good Evening, I have a two part question. My father was in the Vietnam War prior to my birth. I have medullary sponge kidneys and high blood pressure. Do you know if there have been any studies with medullary sponge kidneys and agent orange? And does high blood pressure have anything to do with the medullary sponge kidneys? I’m 45 and my BMI is 29. I realize that he is in the overweight category but I’ve had high blood pressure for 14 years that I’ve known about and my BMI has not always been this high. I’m just trying to figure out if there is any connection and what that connection is?

I do not know of any connection between your father’s exposure to Agent Orange in Vietnam and your diagnosis of medullary sponge kidney (MSK).  MSK is a congenital disease (you were born with it).  High blood pressure is more related … Continue reading

Posted in Ask the Doctor, Chronic Kidney Disease, Diet/Nutrition, Kidney-Related Health Questions, Laboratory Testing, Medullary Sponge Kidney, Treatments

Please help. I need to know if there is only one way to treat my situation. May of 2014, I had a partial nephrectomy of my left kidney due to RCC. Ever since they have found I have MSK, severe collections on both kidneys. As of now, I am aware I have an E. coli bacteria inside the stones of each kidney. I have just come home from yet another hospital stay, 4 days due to an extreme kidney infection. This occurs every several months, and I end up receiving IV antibiotics, INVANZ, for about 3-4 weeks. This I have been told will not long term help my kidneys, but they have said they don’t know what else to do. I am deperate for help. The pain and off and on fevers are the worse, and I haven’t been able to return to work since last year. I can travel and do whatever it takes if you can offer any other alternatives to this getting better?

There is no treatment for Medullary Sponge Kidney (MSK) disease.  This is a condition of the kidney that you were born with and is associated with abnormal pockets on the sides of kidney tubules that result in calcium deposits in … Continue reading

Posted in Ask the Doctor, Chronic Kidney Disease, Kidney-Related Health Questions, Laboratory Testing, Medullary Sponge Kidney, Nephrologist, Urological Issues