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Category Archives: Medullary Sponge Kidney
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 →
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 →
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 →
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 →
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 →
Please talk about medullary sponge kidney. My daughter is suffering with this condition and a lot of Doctors have no idea about the disease. Thank- you for your consideration.
Medullary Sponge disease of the kidneys is a relatively rare disease that may cause kidney stones and can be associated with electrolyte abnormalities as a result of malfunction of the kidney tubules and wasting of potassium and bicarbonate into the … Continue reading →
I have kidney pain on my left side any time I go more than 4 or 5 hours without drinking except during the night when I almost never have the pain. When I drink a lot the pain goes away. When I have the kidney pain, I also have blood in my urine. Not enough that I see it, but enough that the doctors detect it. I live in Germany and I’m not sure if I understand exactly what the doctors are trying to explain. Yesterday I had a CT scan which showed a kidney stone in my left kidney, but it was high up and non obstructive. It also showed multiple, normal-looking cysts on both kidneys and one on my spleen and “Kalk” or calcium buildup in both kidneys. This is the part I’m not quite sure I understand. It sounds like this “Kalk” is like kidney stone dust or calcium buildup or something that when the kidneys are empty it rubs against the walls of the kidney or ureter and causes pain and blood. I haven’t been able to find anything about this type of dust. Can you tell me what this is called in English? Also, the only advice I got from my doctor was to stop eating animal protein, or basically go vegan. I am willing to do this as a good long-term solution, but are there any short-term solutions to get rid of the pain besides constantly drinking lots of water? (Sometimes I drink 3 liters of water in a day and still have pain) Just for background – 6 years ago I had a parathyroid tumor that caused a kidney stone which I passed. The parathyroid gland was removed and my blood test results for calcium and everything else have been normal since then.
Kalk is a German term that can be used to describe “calcium hydroxide”. The description of your situation suggests a disease known as “Nephrocalcinosis”. This has many causes and includes such things as medullary sponge kidney, nephronopthoptisis, medually cystic disease, … Continue reading →
I was diagnosed with medular sponge kidney disease and have multiple stones in both kidneys. (35 at last count) My doctors currently are scheduling to vacuum my right kidney. The left side is not eligible because of the angle its turned. I was told by my nephrologist that I was not eligible for this procedure, period. The other urologists think the procedure will be effective and safe on the right side. Surgery is scheduled for January, any comments.
I am not a urologist and I have no experience with this procedure. I have never heard of a vacuum technique for treating medullary sponge kidney. We have information on our web site about medullary sponge kidney at: https://www.kidney.org/atoz/content/Medullary-Sponge-Kidney In addition, there … Continue reading →
How do I get more information on Medullary Sponge Kidney and Polycystic kidney disease? What are the most common ways to decrease the incidence of kidney stones, UTI, and scar tissue from repeated ureteroscopy and lithotripsy? Thank you for any resources or information!!
There is information about Polycystic Kidney disease (PCKD) on our web site at: https://www.kidney.org/atoz/content/polycystic There is also information the at the PCKD Foundation web site at: www.PKDcure.org There is information about Medullary Sponge Kidney on our web site at: https://www.kidney.org/atoz/content/Medullary-Sponge-Kidney There is … Continue reading →
I have Medullary Sponge Kidneys – I have a lot of stones in both kidneys – and continually get infections. I have a bug in the right kidney at the moment – kiebsiella – and am getting infections about every fortnight. I have found it hard to find anyone to help with my problem. Can you recommend anyone?
Answer: It is best for you to consult with your primary care physician (PCP) to find referral. Neither I nor the National Kidney Foundation provide referrals. Medullary Sponge Kidney is uncommon but not rare. Any nephrologist and urologist should be familiar with … Continue reading →