Medullary Sponge Kidney

Question: What exactly is Medullary Sponge Kidney & Interstitial Cystitis? I have had urinary tract problems my entire life whether it be UTI's or kidney stones. Recently I was diagnosed with Medullary Sponge Kidney Disease (MSK) and Interstitial Cystitis (IC). I know little to nothing about either of these 2 problems, other than I am in constant pain, and the Dr. said I will have to live in chronic pain for the rest of my life. So if there is anyone out there who knows anything about the M.S.K. or the I.C. Please let me know. There has to be someone out there that knows something about this. Please help......

Answer: Unfortunately I don't know much about it, but I was diagnosed last week myself(MSK and IC are the same thing just different names from what my doctor told me). For the past few months I have gotten bad, stabbing pains, had 4 kidney stones, blood in my urine as well what has appeared to be gravel. I'm scard too, but here are some things I learned. Yes, we'll be in pain, so much so that my doc gave me vicodan to keep at home(i'm allergic to morphine). She said increasing my water to 64 ounces a day(2 quarts) will help and to add some lemon juice. Cranberry pills will as well. Every other month on the 3 days before my period i have to take a different, alternating antibiotic to help with the infections. Basically; as i understand it, our kidneys have deep fissures in them like a sponge and can't empty themselves completely causing irritation, build up of minerals that cause the stones and the pain. The good news? It won't kill us. It wont' cause renal failure, we'll never need a kidney transplant or dialysis(or however it's spelled) because of it. The pain is bad, I know, trust me. It brings tears to my eyes. I'm a professional chef and it is affecting my work considerably. I have a good nephrologist(a kidney specialist) if you live in NJ, and if you don't I suggest you get one as they know the disease and can help you live with it. They can help you get your pain in hand and help you life your life w/o severe issues. She even said it's possible with her help for me to one day have healthy children. There is a support group on MSN but I haven't looked it up yet, this all being very new to me as well. I know the constant pain thing, trust me, I've been in pain everyday for the last year, and when I went to the ER they treated me like crap. They told me I was out or attention or drugs; when in reality i just want the pain to stop so I can walk, or sleep or even eat. I can imagine you probably have the same problem. My nephrologist said people fall all over the spectrum in terms of how bad their pain is and how much it affects their lives, some over time even have the insides of their kidney's calcify and have it show up on ultrasounds. I found out because my family doc ordered a cat scan because i was yet again peeing blood and in pain. It showed up on that, and she scared me to death by calling me and telling me to see the specialist, but the dr. she refered me to at the center for kidney disease in southern nj where I live has been a godsend. She spent an hour talking to me about it and mapping out a game plan to see how bad it and to help control my pain so I can have a normal life. If you need someone to talk to more you can email me. i'm in the same boat as you and like i said I was diagnosed last week(8-23) but it explains a lot of the issues I've been having for a long time. I mean, I'm an active 25 year old and it's cutting in my life. I'm sorry you're hurting so bad, but I do understand how much it hurts.

Question: Can anyone relate or give any advice for my kidney stone problems? I am 31 years old and have suffered from urinary tract infections all of my life. At the age of 18 I had my first kidney stone. Since that time I have been hospitalized dozens of times including during 1 of my 2 pregnancies in order to preform stent placement, lithotripsy, basket retrieval for removal of stones. I pass many stones at home but have had many that are too large to pass (6-12mm). I have had 2 urologists treat me and I have been diagnosed with Medullary Sponge Kidney disease. I go through bouts for up to a few months which require multiple trips to the er for pain management or surgeries and then I may go for a few months with hardly and problems. For an example of my history- last December (2005) I went to the er and was admitted for a 8mm stone removal- discharged just to return 2 days later and was admitted for 2 new stones which had fallen from my kidney and causing obstruction. A 6mm and 10mm stone which had to once again be removed via lithotripsy. August of 2006 admitted for another 8mm stone removal, December 2006 admitted to have another large stone removed by lithotripsy. This is the quality of my life- in the hospital or at home with pain more often than not. I have been told by my urologists that due to the disease and the fact that both of my kidneys are full of stones there is really nothing I can do to treat or prevent them but just continue to have the surgeries to remove them or treat the pain for the passable stones. I am very frustrated and looking for any other answers or advice. Thank You. I take pain meds- like vicodin or go to the er if the pain is extreme enough. I have been to the er 2 times in the last 2 weeks, its embarassing because they know me at the er I go to but I can't help it- luckily they are very helpfull because they know my history. I don't like taking the meds but I have to and my urologist isnt very sympathetic and I often am not perscribed enough to last long. I only take the perscribed amount and have been told by many nurses that see the stones I pass that most patients they have treated are screaming in pain for smaller stones. I don't know what else to do but take pain meds at home or go to the er for stronger treatment.

Answer: I talked to a women who has practiced medicine her whole life and is now retired and she told me of a tea that breaks down the stones and is good for preventing it. I forgot the name of it but I am sure a health food store would have it. See a naturapathic doctor to try and eleminate the problem through your diet! Your doctor is just going to treat the symptoms not prevent the problem. I believe there are a lot of different foods to help prevent them and foods that create them. I think your diet would be the most important aspect. Of course remember to drink tons of water. I would definately see a naturapathic doctor. Good luck

Question: kidney problems? I have Medullary Sponge Kidneys which I have had since birth, I do suffer with these with stones and infections. My daughter was suffering with the same sort of symptoms, however she has just had a scan and she was told that she has one kidney bigger than the other and she thinks they called it duplicate kidneys?? Does anyone know what this is? She does suffer with infection like symptoms and pains in her kidneys? what would the treatment be for this?? x Sorry I meant to mention that I have made an appoint ment to talk about this with the DR but we have to wait till after christmas... x

Answer: the doctors never discussed treatment options with you? Call your doc back and perhaps get a second opinion. Its the worst thing in the world to watch your children in pain, I wish I knew something to help your situation but all I can suggest is to see another doctor

Question: TMI.... BUT... I only urinated twice today? Hello, I am being a total hypochondriac right now... so bare with me. I have a condition called Medullary Sponge Kidney and I therefore make a ton of kidney stones. The last CT I had was over a year ago and I had 13 of those little suckers in there. Anyway, because of this I try to stay well hydrated. Today I drank 8 glasses of water (64 oz) throughout the day. I peed once this morning (10:00am) before drinking anything, and I just peed now (10:30pm). So, I urinated only twice this entire day. The second time I urinated I had a bad burning sensation (almost like a UTI). I have been having a bit of kidney pain for the last few weeks, but I blamed it on the stones. I'm a bit worried now... Should I be worried? Anything I should watch for? My nephrologist won't be in the office until Monday.

Answer: See your nephrologist on Monday. Unless you get some type of horrible pain tomorrow, which probably won't happen. Then go to the ER. Kidney pain is your body trying to tell you something is wrong. You, especially, have to always LISTEN TO YOUR BODY. Bless you and good luck! ;)

Question: Am I a horrble person who's dammed my baby? I found out today I was pregnant, I"m 25 years old. This is a complete surprise because I am on birthy control. I feel like I horrible person person because 2x last week I had like two or 3 glasses of blueberry wine(12% alcohol by volume according to the label). I want to know if I've ruined my child's chances of having a normal life? I also take paxil which is a class d mediation. 10mg a day since the 3rd of september. I'm not a good person, and I feel really horrible about this. I was in a hospital for depression from the 3rd till the 8th. I didn't know I was pregnant till this morning and it's a huge surprise. I also have medullary sponge kidney disease. My kidney specialist won't treat my pain caused by this because of the my being in the psych hospital but I am in intense pain daily, is there anything I could do for this as well? I am scared and don't want to wait till I see the high risk doctor for the baby on the 6th to know what I've done. (my ob fit me in today when i called and got me an app. w/ the high risk doctor.) Has my stupidity damaged the baby in side of me?

Answer: No. I think It's a very good thing you are concerned, that's a big indicator you'll be a great mom. The drinks and low dose of anti-depressant are ok. Less is better, you'll be comforted at the Dr.s office. You're not stupid! Busterbuns.

Question: how can i get over this pain? hello my name is rachelle i am 24 years old i am > slightly over weight i have been in pain since as early as i > can remember no doctor has ever listened to me i need help i > have 4 kids and its becoming very dificult for me to do day > to day tasks i have medullary sponge kidneys and very very painful menstrauls and my legs have sharp shooting pain in both of them and they swell up. i am very tired all the time and when i see the doctors they always say im malnurished but i eat right and take vitamains and minerals i am so tired of being in pain and feeling like i have the flu all year round please help

Answer: Being slightly overweight does not cause chronic pain and extreme fatigue. I don't know anything about medullary sponge kidneys, but I'm sure if that condition could cause your symptoms, your doctors would have told you. Chronic pain and fatigue are very common symptoms of fibromyalgia and chronic fatigue syndrome. Many people diagnosed with those syndromes later find out that they actually have Lyme disease. I don't know if this is the case for you, but you have been suffering so much, for so long without answers, it is worth getting tested for Lyme disease, in my opinion. Many people with Lyme disease never notice a tick bite or a rash. Tick bites are painless, and ticks are extremely small. Rashes can be under your hair or other places on your body you don't look at. Lyme disease exists in all 50 states, and many other parts of the world. You'll need to see a doctor knowledgeable about chronic Lyme disease. They can be hard to find. I suggest you ask for a referral on the following message board if you are interested. http://flash.lymenet.org/scripts/ultimat… The test for Lyme disease is a blood test combined with an evaluation of symptoms. If you do have Lyme disease, the main treatment is antibiotics.

Question: pain please help me dont know what to do? hello my name is rachelle i am 24 years old i am > slightly over weight i have been in pain since as early as i > can remember no doctor has ever listened to me i need help i > have 4 kids and its becoming very dificult for me to do day > to day tasks i have medullary sponge kidneys and very very painful menstrauls and my legs have sharp shooting pain in both of them and they swell up. i am very tired all the time and when i see the doctors they always say im malnurished but i eat right and take vitamains and minerals i am so tired of being in pain and feeling like i have the flu all year round please help

Answer: I had these same symptoms for years. I was misdiagnosed so many times until my gyno did an internal ultrasound and found that I have endometriosis. She suggested I have surgery to remove it but it is not really an option for me. I am now getting injections of Lupron which essentially has put me into menopause. I feel terrific! My shooting pains, gut, cramps, nausea, fatigue, etc. are gone! The first two weeks were the best but now as my body has acclimated I don't feel 100% but I'll take it! Ask your gyno to do an internal ultrasound to check for cysts, endometriosis, and fibroids! I know that all of these things can cause the symptoms you have described.

Question: is this a female problem or something else? hello my name is rachelle i am 24 years old i am > slightly over weight i have been in pain since as early as i > can remember no doctor has ever listened to me i need help i > have 4 kids and its becoming very dificult for me to do day > to day tasks i have medullary sponge kidneys and very very painful menstrauls and my legs have sharp shooting pain in both of them and they swell up. i am very tired all the time and when i see the doctors they always say im malnurished but i eat right and take vitamains and minerals i am so tired of being in pain and feeling like i have the flu all year round please help also my left arm and left leg feel like there being constricted my viens buldge out when it happens its like something is being tide around them please help very worried

Answer: have you seen a show called Mystery Diagnosis?try looking on the internet for diseas w/ your symptoms.doctors don't know everything and you should always get a 2nd opinion no matter what they tell you.if your body's telling you something is wrong then it probably is.