Medullary Sponge Kidney

[nacho2]

Does anyone know where I can find a doctor who specializes in medullary sponge kidney? I am having problems with a urologist telling me it shouldn't cause pain and then a general surgeon says it can cause pain. I just want to find a doctor who treats this. I am tired of people telling me it cannot be this. I have lost 10 pounds in a week and have pain and nausea about all the time. I am starting to get a little depressed about all this.
Thanks.

[Beth Witten MSW ACSW]

Here's some information on medullary sponge kidney.
http://www.healthatoz.com/healthatoz/Atoz/ency/medullary_sponge_kidney.jsp

Here's a discussion board with questions and responses from doctors about MSK:
http://www.medhelp.org/HealthTopics/Medullary_Sponge_Kidney.html

The pain and nausea that you say you have could be a sign of a kidney infection and/or kidney stones. If you've reported your symptoms to a urologist and he/she hasn't run tests to see what's causing the pain and nausea, you might want to consider making an appointment with another doctor. Major medical centers that train medical students are most likely to be on the cutting edge of research and may be able to suggest someone you can see who knows about medullary sponge disease and possibly is doing or knows those that are doing research on it.

[Unregistered]

There is a support group on line for individuals with medullary sponge kidney on MSN.
The URL is http://groups.msn.com/medullaryspongekidney

[Unregistered]

You may want to try a nephrologist which specializes in kidney disease rather than a urologist who specializes in the urinary tract. The support group the person above posted is a good group which I happen to be a member of. There is a lot of good people with good information on it. I am also dealing with medullary sponge kidney. You are not crazy. People with MSK do feel pain with or without infection or kidney stones. Most doctors don't know how to deal with it because they're not that familiar with it. Seeing a nephrologist would be the best route. I would give you information on MSK but it would take a long time to type, but like I said, the MSN group has a lot of helpful information and I highly recommend checking it out. By no means, do not use the site as a source for self treatment. You still need to be in the care of a doctor. I'm sorry you've not had the answers you seek. I feel your pain! You are not alone.

http://groups.msn.com/medullaryspongekidney

[Unregistered]

I too was told this shouldnt cause any pain. I also have MSK and it DOES cause pain. I had a urologist tell me that there are no nerve endings in the kidney. WHAT??? that same urologist even after my renal scan where I had INTENSE pain during it STILL say that it was muscular skeletal pain and not kidney pain and she RX me MOTRIN!! I only have 70% funtion in my right kidney, and thats the only one I have left! I am pretty sure your not supposed to take motrin and I know my pain is in my kidney!! I went to a nephrologist and they DO know more than the urologists do. I would also recommend going to a nephrologist. Your pain is real and they can tell you what to do about it. Good Luck :)

[Unregistered]

I have been reading everyone's posts. I am 25 and I was diagnosed with MSK when I was 18. I have had numerous lithotripsy procedures as well as a couple to dialate my ureters. I have passed more kidney stones than I can count in the past 7 years. I have went to numerous urologists, who recently have told me that they can no longer help me. My last urologist actually referred me to a nephrologist. I have currently went to two different nephrologists. They have both informed me that they cannot do anything to help me as well. I was told to drink more water. The last doctor actually told me he did not know why I was referred to him!!! I am frustrated and feel as though I have to deal with this completely on my own. No doctor has been able to help me. I know that there has to be someone out there to help, but I am at an standstill. I have been lucky to not have passed any stones in the last few months, but I am constantly uncomfortable due to kidney pain. Just wanted to tell my story and tell everyone that I feel your "pain" to say the least.

[Beth Witten MSW ACSW]

Here's an article that was written by pediatric nephrologists for healthcare professionals who are taking care of patients with MSK. It includes recommendations for medications (under Medical Care) and diet (under Diet) that may help to prevent kidney stone development in patients with MSK. The article was written for healthcare professionals and you might want to share it with your nephrologist.
http://www.emedicine.com/ped/topic1394.htm

Some doctors become frustrated when they can't solve a problem. The article linked below suggests when patients have pain that is not associated with things that the nephrologist knows how to address -- kidney stones, infection, obstruction -- they should be referred to doctors who specialize in pain management.
http://www.emedicine.com/med/TOPIC1413.HTM

[DoriSchatell]

A couple of brand new articles suggest that high fructose corn syrup (HFCS) can increase the rate of kidney stone formation. HFCS is a very common food additive that has also been implicated in higher rates of type 2 diabetes. You can read food labels to avoid it. Here's the more useful of the two abstracts:

Kidney Int. 2008 Jan;73(2):207-12. Epub 2007 Oct 10.
Comment in:
Kidney Int. 2008 Jan;73(2):139-40.
Fructose consumption and the risk of kidney stones.

Taylor EN, Curhan GC.
Renal Division and Channing Laboratory, Department of Medicine, Brigham and Women's Hospital, Harvard Medical School, Boston, Massachusetts 02115, USA. entaylor@partners.org

Fructose consumption has markedly increased over the past decades. This intake may increase the urinary excretion of calcium, oxalate, uric acid, and other factors associated with kidney stone risk. We prospectively examined the relationship between fructose intake and incident kidney stones in the Nurses' Health Study I (NHS I) (93,730 older women), the Nurses' Health Study II (NHS II) (101,824 younger women), and the Health Professionals Follow-up Study (45,984 men). Food frequency questionnaires were used to assess free fructose and sucrose intake every 4 years. Total-fructose intake was calculated as free fructose plus half the intake of sucrose, and expressed as percentage of total energy. Cox proportional hazard regressions were adjusted for age, body mass index (BMI), thiazide use, caloric intake, and other dietary factors. We documented 4902 incident kidney stones during a combined 48 years of follow-up. The multivariate relative risks of kidney stones significantly increased for participants in the highest compared to the lowest quintile of total-fructose intake for all three study groups. Free-fructose intake was also associated with increased risk. Non-fructose carbohydrates were not associated with increased risk in any cohort. Our study suggests that fructose intake is independently associated with an increased risk of incident kidney stones.

[Unregistered]

HI! I just found this site and thread. I also have MSK and have suffered with unexplainable pain... as have many of us!! Unfortunately the MSN site is being closed!

There is however, a lot of support, research and information on the medhelp site

http://www.medhelp.org/forums/show/256?personal_page_id=30644


There is also some research and more being added soon on the site below.
www.moarkic.com

Though this site is mainly for IC patients in Missouri and Arkansas, a
menu item was set specifically to post research for MSK patients as well!

Keep watching for more research and info soon!

I just want you to know that you are not alone and their are treatment options out there to help!

[unregistered]

Hello All,

I have MSK and produce calcium oxalate stones. I've been where you are now and I know how hard it is to find accurate information regarding MSK online and/or trying to find a good Urologist/Nephrologist who *listens* and understands as they educate you on this uncommon anamoly we all share.

The above poster, Shelly, has been a wonderful source of support for me the past few years. She not only is a superb MSK researcher with an enormous amount of dedication and knowledge, but she also suffers from MSK in a serious way that has been life altering for her. Her dedication to helping others is to be commended by all of us who suffer from this awful MSK.

Shelly and I, as well as many other veteran and newbie MSKer's, have much info to offer at MedHelp.org. MedHelp is an online support community with over 250 communities dedicated to only health related concerns and have partnerships with many fine institutions such as Johns Hopkins, Nat'l Jewish, just to name a few. MedHelp's motto is "finding cures together" and in this way, I am pleased to share with you their MSK Community as a compliment to your Life Options board as it relates to MSK:

MSK MedHelp Community: http://www.medhelp.org/forums/show/256

There is a wealth of resource info posted on the Health Pages in the MedHelp MSK site to help you along this bumpy road we share.

Health Pages: http://www.medhelp.org/health_pages/list?cid=185

Why Does it Hurt, Yet no Stone? - A sample discussion from the MedHelp MSK Site:
http://www.medhelp.org/posts/show/565929


MedHelp also has over 20 free trackers to help track your symptoms, lab results, and pain. These trackers can easily be e-mailed to your doctor before your appt or telephone time and have been met with fantastic acclaim by all who use them (professionals and patients alike).

All the trackers including the KIDNEY, PAIN, CBC Labs & Water Consumption FUNCTION TRACKER: http://www.medhelp.org/land/health-trackers

Mood: http://www.medhelp.org/land/mood-tracker

Sleep: http://www.medhelp.org/land/sleep-tracker

Pain: http://www.medhelp.org/land/back-pain-tracker


Also, for PHR’s (Personal Health Records): http://www.medhelp.org/land/health-records


I wish each and every one of you a very Happy, Healthy New Year. Please feel free to contact me at ChitChatNine@yahoo.com.

With regards,
C - MSK w/calcium oxalate stones and recurring UTI's

[DoriSchatell]

Thank you, both of you, for taking the time to share these very helpful resources!

[Unregistered]

Does anyone know where I can find a doctor who specializes in medullary sponge kidney? I am having problems with a urologist telling me it shouldn't cause pain and then a general surgeon says it can cause pain. I just want to find a doctor who treats this. I am tired of people telling me it cannot be this. I have lost 10 pounds in a week and have pain and nausea about all the time. I am starting to get a little depressed about all this.
Thanks.

I was so happy to see someone with the same symptoms as me. I was diagnosed MSK at 19 years old. 16 long years of kidney stones, UTI's, and bladder infections has been a nightmare. I also have had kidney pain, nausea really bad for the past 2 months. I go to the urologist and they say the same thing. MSK can not cause back pain unless you are passing a kidney stone. I feel like I'm going crazy, i feel non stop back pain and nausea its not getting any better. I also feel very depressed, does anyone have any good advice?

[Beth Witten MSW ACSW]

I hope you had a chance to read all the previous posts and checked out all the links in them. In addition, here's an article from 12/08 on MSK. Obviously, it would be important to screen for and rule out all possible sources of pain. In the follow up section it states that when the source of the pain can't be found, pain management should be provided:
http://emedicine.medscape.com/article/242886

That said, I'd recommend that you make an appointment with a nephrologist. It would be important to go to this specialist to find out how the MSK is affecting your kidney function.

[PaulineV]

I am so happy to have found others, that are experiencing this...I felt so alone. I too have reoccuring pain and multiple stones...over the last 15 years...lots of lithotripsy...Pain, and mental anguish. No one really can relate to me. Sometimes I feel like I cannot possibly endure this anymore.
It has consumed my life.

[DoriSchatell]

Hi Pauline,

There are few things worse than being told that a health problem that causes symptoms is "all in your head." Connecting to others who have MSK and can validate your experiences can be a great source of help. If you read this whole thread, there are LOTS of resources and places you can connect. You can also send people private messages through this forum (to registered folks), and trade "real" email addresses. You can also trade tips, share names of doctors who know a lot about the problem, discuss which drugs have helped, etc. As you've said, just knowing that you're not alone is a good start!

[Unregistered]

It has been three years since my wife started having kidney problems, she is only 26 and also has lupus. We now have a 6 month old son, but she is unable to care for him herself due to the pain caused by her kidney. She has many stones, but none seem to pass, they just show up on scans. We have been to the pain clinic and they unsuccessfully prescribed methadone instead of the morphine she was on. Does anyone find other pain medicines that are moer effective than others?
As an outside participant, it is comforting to read that other people are having pain that is unexplainable. It has been difficult to explain to my family that my wife isn't making this up!

[DoriSchatell]

Hi Unregistered,

Does your wife, by any chance, have Sjogren's syndrome and Lupus? Lupus on its own can cause kidney damage, but it's usually painless. Adding Sjogren into the equation can mean lots and lots of painful little kidney stones. One woman in a forum said that calcium channel blockers (a type of blood pressure pill), asparagus, and diet Coke helped. We're not doctors, and I can't say why those items would matter, but they seem pretty harmless. (A doctor would have to prescribe blood pressure pills, of course). Anyway, it's certainly worth analyzing her stones if she has any that can be caught. The make-up of the stones can lead to treatments.

In general, flushing out the kidneys with lots of fluid is suggested. Here is a very good article from the National Institutes of Health about kidney stones that has some useful tips. http://kidney.niddk.nih.gov/Kudiseases/pubs/stonesadults/.

One caveat--the article suggests that an IVP (intravenous pyelogram) be done to look for stones. This is an X-ray dye test, and anyone who has reduced kidney function should ask for precautions before having an X-ray dye test. Here is an abstract about something that has been proven to help protect kidneys from X-ray dye. (I bolded some key points).

BMC Med. 2009 May 13;7:23. Links
Sodium bicarbonate-based hydration prevents contrast-induced nephropathy: a meta-analysis.

Meier P, Ko DT, Tamura A, Tamhane U, Gurm HS.
University of Michigan School of Medicine, Ann Arbor, Michigan, USA. pmeier@med.umich.edu

BACKGROUND: Contrast-induced nephropathy is the leading cause of in-hospital acute renal failure. This side effect of contrast agents leads to increased morbidity, mortality, and health costs. Ensuring adequate hydration prior to contrast exposure is highly effective at preventing this complication, although the optimal hydration strategy to prevent contrast-induced nephropathy still remains an unresolved issue. Former meta-analyses and several recent studies have shown conflicting results regarding the protective effect of sodium bicarbonate. The objective of this study was to assess the effectiveness of normal saline versus sodium bicarbonate for prevention of contrast-induced nephropathy. METHODS: The study searched MEDLINE, EMBASE, Cochrane databases, International Pharmaceutical Abstracts database, ISI Web of Science (until 15 December 2008), and conference proceedings for randomized controlled trials that compared normal saline with sodium bicarbonate-based hydration regimen regarding contrast-induced nephropathy. Random-effects models were used to calculate summary odds ratios. RESULTS: A total of 17 trials including 2,633 subjects were pooled. Pre-procedural hydration with sodium bicarbonate was associated with a significant decrease in the rate of contrast-induced nephropathy (odds ratios 0.52; 95% confidence interval 0.34-0.80, P = 0.003). Number needed to treat to prevent one case of contrast-induced nephropathy was 16 (95% confidence interval 10-34). No significant differences in the rates of post-procedure hemodialysis (P = 0.20) or death (P = 0.53) was observed. CONCLUSION: Sodium bicarbonate-based hydration was found to be superior to normal saline in prevention of contrast-induced nephropathy in this updated meta-analysis.

[Unregistered]

After a number of doctors screwing up (Medullary is not well known by most nephrologists) including one doctor who told my wife she'd have to leave the massive staghorn that developed in ker left kidney, because no one could remove it. We were blessed to find and see Mantu Gupta, the number one urological surgeon in the USA with Columbia Prebyterian in NY. He said Medullary is reletively benign, hower some patients will suffer stone growth and infections. Thus the pain. Where everyone said the stone she had was too complex to remove, (the kidney would ultimately fail within a year) doctor Gupta removed 99% of this stone with a special type of surgery he and a few others developed in a 3 hour operation. She was only in one day and recovered in a week, with 2 very small insisions. Most important we discovered that supplements and diet can prevent the growth of these stones rendering this disease fairly benign. No one told us about any of this, (she was with a nephrologist 11 years!) and he said this stone would never have formed in the first place if she was on these supplements. My advice? Get away from these nephrologists and urologists who know nothing about your disorder and see only the leader in this field such as Mantu Gupta or others affiliated with the top hospitals. Do your homework, research doctors and see the best. I have also heard that a doctor Ernest Sosa with NYU is also a field leader in this area. Whatever, if you live near NY, great. If not get on a plane and take a consultation, the price is worth feeling better about your situation.

[DoriSchatell]

Thank you for the hopeful message, unregistered--sorry for the delay moderating it (I was out of town without my laptop). You mentioned supplements, and certainly those might differ from person to person, but would you mind sharing some specifics about which ones might help prevent future kidney stones with this condition?