Medullary Sponge Kidney disease (MSK) and tons of symptoms!

Hi and thanks for sharing. I was diagnosed at age 24, just after graduating from nursing school in 1978. I was frequently ill as a child with vomiting and lots of pain, after diagnosis I realised all of the episodes of servious pain and curled up ill were stone passing events that went untreated. Since that time I have searched for solutions, physicians and treatments all pretty much in vain. I have been fortunate to have found a few understanding doctors, but have moved a few times and replacing the doctor is always the biggest challange. I have passed and collectected about 80 stones, and have removed they claim over a hundred. I am 60 now and suffer from serious chronic pain, probably fibro. I also have constant pain in my left flank and groin, except for a few months after I get my kidneys" cleaned: out as they say. I have an active high stress professional career, not sure how I manage but this is some of my tips: 1) ALWAYS drink 3 quarts or more water a day. I gave up all other drinks except water. It took me about three months years ago, and I am NEVER without a water bottle, even one next to my bed. 2) Heating pad: I travel for my job so one in my suicase, one in my lounge chair, one in my office chair and one in my bed. Yes, I have been sleeping on low setting for over 10 years. I purchase the one for my bed that does not go off in 2 hours or I wake up. (Never use an extension cord to plug it into.) 3) Search and keep searching for a doctor willing to learn if they do nto already know about MSK. My nephrologist did NOT, and though nice when I found a urologist specializing in stones the nephrologist was not treating me right so I fired him! 4) 24 hour urines are painless and easy but will tell so much about your body. Make sure your MD is performing these at least once a year. 5) Lower your salt or sodium intake. Very important. 6) Low blood pressure is much better than high. Just rise slowly and stand and deep breath getting  your bearings before taking off. 7) Do not get dependent on pain medications....I saw a pain doctor for years and realised all of the patches and meds had so many side effects I could hardly function and kept me in a state of anxiety. Though difficult for a few months I weaned off of everything. Also a hot tup would be a great investment. Save the pain emds for when passing a stone, they will be so much more effective. I have passed all 80 of my collected stones by myelf at home by using the following: immediately guzzle water till you feel nausea, I have flomax to use and vicodin, then I lay on my heating pad. Sometimes out of desperation I push at the stone with my fist or fingers moving it down, though painfull to do! I always celebrate after passing and make show my husband the stone...it is like a challange ha ha! I am always VERY fatigues before a stone appears, and a day or two after I pass one. Hate that part!

Good luck to you and never give up......hugs

I am not sure where you live but I have finally found a urologist that goes in and "cleans" both kidneys out to remove as many stones as he can, about every 2 years. It gives me great relief from the pain and improves my quality of life for many months. His name is Dr. Lingeman, at IU - INdianapolis. He runs the Kideny Stone Institute and gets patients from around the world. I believe there is one more MD doing the same prodedure in MI. There is a MSK support group on face book with good information.

Thank you CICI, I actually live in Oklahoma!  I was apart of the facebook group for a while but I hate facebook lol so i shut it down. It WAS a great group though. I am glad you have a wonderful doctor....

I also have other symptoms I didn"t mention before, aside from the pain and fatigue, i get these little sore like bumps sometimes in different places on my body, they are painful but go away within a day or so. they are not very big about the size of a pensil eraser, I think it might be do to kidney filtering, Any Ideas? I also deal with a great deal of joint pain. from knees to thumbs. I feel weak and completely drained.... sometimes I wonder if im not dying I feel so bad. I have bloating and cramping and I mentioned the lower back pain and flank pain, am I crazy that I think this is all do to my Kidney Disease? I do have IC but its just isolated to bladder and groin pain.   My fingernails have hugh ridges in them and they wont grow and my hair is so so dry and brittle. OMGosh I am only 45 I feel 80. This disease sucks!

Hello, my name is Gina and I have been diagnosed with msk but every time I go to the hospital they tell me there's nothing I can do about it unless I have a stone that becomes too big to pass and is blocking my urethra. I've had 4 surgeries already for large stones and lately I'm in the hospital like every other month if not every month with more pain. Please if you know of a urologist that can go in and clean them all out that would be wonderful, I can't imagine going without pain , it's hard to work and go to school while dealing with this.

Have your parathyroid hormone checked DiddyC. I found in my research quite the link between kidney issues and Hyperparathyroidism.

Hi everybody just writing this on behalf of my wife who suffers from MSK she has it in both kidneys   She was diagnosed over 22 years ago  has had numerous surgeries  she now is 41 just seems the older she’s getting the worst the problem is getting Live here in the UK and the health service is absolutely a shamble looking to go private does anyone know any good honest truthful doctors in the UK or perhaps Europe That can help us thanks