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...nge_kidney.jsp

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

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

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

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

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.

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/2..._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!

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