If, for some strange reason, you set out to design a kidney that could form stones as quickly as possible, you might end up with something like a medullary sponge kidney.
Medullary sponge kidney (MSK) is a condition in which a portion of the kidney known as the medullary pyramid is found to have dilated tubules (tubules are small tubes through which urine drains) and numerous small cysts (cysts are fluid filled hollow spaces). The cysts are small, measuring from 1 to 8mm, but are numerous. The cysts give the kidney, when cut, the appearance of a sponge – from which the name of “medullary sponge kidney” was coined. These cysts and dilated ducts lead to poor drainage, making it easier for stones to form. These abnormalities can be seen throughout both kidneys or may be localized in only one part of a kidney. The stones formed in MSK tend to be numerous and scattered throughout the kidney.
How do I know if I have medullary sponge kidney?
Medullary sponge kidney is felt to be non-hereditary (you don’t pass it on to your children). Many patients with MSK never develop problems and don’t know they have the condition. One study estimated that MSK may occur as commonly as 1 in 200 persons while other more conservative estimates report an occurrence rate of 1 in 5,000 to 20,000 persons.
Because many patients with MSK develop no symptoms and remain undiagnosed, reliable data on how many will form stones is not available. In one study of 56 patients from one hospital, the authors reported that 30% of the MSK patients that they studied never developed stones. Among the stone formers, MSK appears to be more common in females and usually first presents in the 30s.
The diagnosis of medullary sponge kidney is made with imaging studies, either with an intravenous pyelogram (an older type of x-ray) or with a contrast CT scan. These imaging studies will show a characteristic distribution of stones or calcifications in the location of the medullary pyramids and contrast pooling in dilated tubules. In order to confirm the diagnosis, the imaging study should include intravenous contrast in order to demonstrate the dilated tubules that are the hallmark of MSK. However, most CT scans for kidney stones are performed without contrast and in this case the diagnosis, while likely, is not considered definitive because other stone related conditions can also lead to an appearance similar to MSK on a non-contrast CT scan.
Non-contrast CT scan of a patient with medullary sponge kidney. Multiple stones and calcifications can be seen in both kidneys. To see examples of contrast accumulating in the medullary pyramids of MSK patients on a contrast CT scan or intravenous pyelogram, visit these sites: CT scan or intravenous pyelogram.
What are the symptoms of medullary sponge kidney?
McPhail and colleagues reported that among 56 patients with MSK, the most common presenting symptoms included:
- Flank pain in 52%
- Microscopic blood in the urine in 36%
- Visible blood in the urine in 16%
- Urinary tract infection in 7%
- Abdominal pain in 7%
- Testicular pain in 4%
- Imaging for other causes in 4%
What type of problems can medullary sponge kidney cause?
Individuals with MSK most commonly present with kidney stones, urinary tract infections, or blood in the urine. In individuals with MSK who form stones, other metabolic abnormalities that predispose someone to form stones are also commonly found, including hypercalciuria (high calcium levels in the urine) and renal tubular acidosis (a disorder with the kidney’s handling of acids).
It therefore appears that just having MSK by itself is not enough to form stones (30% of MSK patients don’t form stones). However, combine the abnormalities found in MSK with someone who has a metabolic tendency to form stones and you will often see an astounding number of stones developing throughout the kidneys.
X-rays for patients with MSK are often impressive for the sheer numbers of stones seen. Not all those stones will necessarily be in a position to drop into the ureter and cause traditional stone symptoms. In order to do so, the stones need to have access to the hollow collecting system portion of the kidney. Instead, many are often embedded in the solid tissue of the kidney (the parenchyma) where they are unlikely to result in a stone passage.
In some patients however, the non-obstructing stones seen in MSK can be associated with significant and chronic pain, even if they are not passing. The pain in this situation can be constant in nature, unlike the episodic pain traditionally seen with kidney stones. It is not certain what causes this pain but authors have proposed that the small numerous stones seen in MSK may cause obstruction of the small tubules and collecting ducts in the kidney, leading to the pain. This pain can be debilitating and treatment is challenging. Narcotic medication, even with large quantities, is often not adequate. Some success with pain control for MSK patients with this type of pain has been reported using laser lithotripsy (see below).
The most common stone types in MSK are calcium oxalate and calcium phosphate.
Thankfully, MSK does not commonly lead to kidney failure.
What can be done about medullary sponge kidney?
Treatment for MSK focuses on prevention and treatment of stones, management of pain, and prevention of infections. There is no treatment available to fix or remove the small cysts and dilated tubules associated with the condition.
In stone formers, maintaining a high fluid intake and treatment with hydrochlorothiazide (to lower urinary calcium) and/or potassium citrate (to raise urinary citrate) are used. Metabolic evaluation with urinary and blood testing can be used to identify specific metabolic abnormalities that increase a person’s risk for stones. In addition, some authors advocate the use of hydrochlorothiazide in all patients with MSK, even when urinary calcium levels are normal.
Treatment for stones that have already formed include the same approaches used for other stone patients, including ureteroscopy, shockwave lithotripsy, or less frequently, percutaneous nephrolithotripsy. Due to the large number of stones formed in MSK and the fact that many of those stones may not be within the collecting system, it is not usually necessary or possible to completely eradicate stones in a patient with MSK.
In patients who have chronic pain associated with MSK, ureteroscopy with laser lithotripsy (called “ureteroscopic laser papillotomy”) may be an option to relieve discomfort. The procedure involves fragmenting and extracting all visible stones in the kidney with the intent to “unplug” and clear obstructed ducts that may have stones trapped in them. In a paper from three institutions, Gdor and colleagues reported on their experience with a total of 65 patients who collectively underwent 176 procedures. All patients in the study had chronic flank pain and multiple non-obstructing kidney stones. 50 patients had followup information available. The majority of patients who underwent this procedure experienced a reduction in their pain (83%). On average, the duration of pain relief from surgery was 26 months. Of note, 17 of the patients in the study had a diagnosis of MSK and their pain relief was similar to that seen in non-MSK patients.
If you have been diagnosed with medullary sponge kidney, share your experience or ask a question below.
References:
Campbell-Walsh Urology 10th Edition, 2011.
McPhail and co-authors, “Nephrolithiasis in Medullary Sponge Kidney: Evaluation of Clinical and Metabolic Features”, Urology 2012.
“Medullary sponge kidney” National Kidney and Urologic Diseases Information Clearinghouse, 2008.
Gdor and co-authors, “Multi-Institutional Assessment of Ureteroscopic Laser Papillotomy for Chronic Flank Pain Associated with Papillary Calcifications”, Journal Of Urology 2011.
Editor’s note: This post was updated on 5/15/12 to include more information on diagnosis, pain related to medullary sponge kidney, and treatment options.
I’m 19 years old and have had this problem with MSk for about 2 years now I also have type one diabetes among other health problems, i dealt with the Pain of MSK for about six months is ruined my life, i have had multiple doctors say there is nothing they can do but i am seeing now that they just did not give a damn. I was afraid at first of what they would do to treat it and thought that all these doctors would just think of me as an addict or drug abuser when all I’m looking for is some relief in my life. i guess what I’m asking is am i in the right to want a pain management doctor among other doctors to help solve this problem? I mean im only 19 i have no idea what I’m to do and asking for help just is not me. Please tell me is this MSK disease something to take seriously and is getting the medical help Important? or is this just a medical problem i have to deal with alone…
I am glad for the internet world as I always felt like the only person in the U.S. to have this MSK curse. I was diagnosed in my early 20s. I went from dr. to dr. for a while as not many of them seemed concerned with my chronic pain. I always have many stone formations in every xray. I had lithropsy done 3 times and on Nov. 9 2012 I had a nephrolithotomy on my right kidney. The dr. will see me again soon and decide what is needed for my left. I have tried every diet and med. to stop the stones, but so far nothing has worked. I have however found some relief at times with my inversion table. I bought this at a sports store a few years ago..hanging upside down for a while seems to break up the kidney aches i get even at times when I am not passing a stone. I have also found it helpful when I am passing a stone, not always but usually it will relieve some of the pain. The name brand Teeter for hanging upside down is very expensive but sports stores usually carry other brands as well. Good luck to you all out there who are suffering this . If any of you have other health issues you may want to check with your dr. before using an inversion table and make sure its safe for you. I hope this helps others as much as it has helped me.
I have been dealing with this condition since 2005 I have had 40 surgeries litho, stents 5 surgeons. I had one accuse me of purposely causing my stones. I have stopped drinking anything with caffeine citirus fruit, drinks, I have been put on water pills that havent helped. this has affected my life passing stones on a daily basis has become my life. I am hoping someone somewhere can give some advice as how to slow them down
I have not been diagnosed with MSK but have had my urologist say that I have extensive califications in both kidneys. Today I went in to his office trying to find the cause of my strong flank and lower back pain. I believe I have MSK as both the urologist I have seen have mentioned sponge kidney, however neither of the urologist I have seen believe me when I say I have constant pain coming from my kidneys. Right now I have a great internal medicine doctor who is providing me with adequate pain medication to function but I would like answers and I am will to drive to find them.
Do any of you see a urologist or kidney specialist in the Oklahoma that had experience with this type of pain and MSK.
I’m in Oklahoma and I’m seeing, Natalie A Esparza MD(405) 749-9655 at 11000 Hefner Pointe Dr
Oklahoma City OK 73120
I hope this helps she is the one that diagnosed me with MSK. But, she doesn’t believe that it causes pain. Once I got it diagnoses my family physicians sent me to a pain management specialist. He has helped a lot with my pain(Dr. Jason Jackson) All Dr. Esparza does is run scans 2 times a year to check on the size of my stones and I go I’m any and every time I have blood in my urine.
I really hope this helps you
Wow! Seems they have come a long way in research over the years. I’m shocked to find how many people are dealing with the same issues. One thing that has always had me curious was did pregnancy play a hand in kick starting my ordeal. I know it’s a birth defect but I was always a healthy child growing up without ever getting sick and then when I was 17 weeks pregnant with my first child at age 18, I ended up with my first hospital trip ever with raging kidney infection staying a week in the hospital. Four weeks after my first child was born I ended up being rushed to the hospital with severe pain. They had to put a catheter in from all the blood coming out of my bladder and ended having to have transfusion from blood loss. That’s when I was diagnosed with MSK. I have stones loaded in both kidneys and have been on daily antibiotics for years to keep infections down. I’ve been hospitalized dozens of times over the years and currently have stents to be replaced every three months. I’ve had multiple surgeries to laser stones and currently planning two more in the next 30 days. I live with daily pain ( burning, throbbing, aching, sharp piercing pain and sometimes fills like someone pouring acid in my kidneys) my urine is usually red wine in color ( freaks out the hospital staff) and I’m tired of dealing with this. I’m 32 years old and do not look forward to a lifetime of this. I read sites that seem to talk about MSK like it a very mild kidney disease but I think not!!! Let them get stones stuck dozens of times and see if they’re not climbing the walks from the severe back building pressure-like pain. I’ve been told several times that one of my kidneys have been on the verge of shutting down. No one in my family suffers from kidney problems. They first told me it was hereditary. I’m soooo glad to see more information coming out about this. I’m waiting on the day I can wake up feeling normal again. If they have any clinical trials I would live to help if it advances treatment for MSK. Good luck to everyone that suffers from this disease!
I started getting stones when I was pregnant with my first child. I spent a lot of time in the hospital. For the last 5 years I have had a lot of different Dr trying to find out why I keep making stones:( this year I got another Dr that ran a lot of the same test that I’ve had done before, but this time she gave me an answer. I have been googling sponge kidney trying to find out just what to do. I’m so happy to find this page and to see I’m not alone. I go to my family Dr. to get meds. My urologist only wants to see me every 6 months. She has told me what I have but not much help after that. I will pray for you all keep your heads up at least that’s what I’m trying to do
All my Dr told me was that it’s a birth defect that people don’t find out till they are in mid 30s before they find out. I have found more out about it by looking things up myself and it’s starting to make me understand a lot about the pain I’m in. So I do want to say thank you to all that tell their story.
Hi everyone! I’m a 48 year old female, I had my first surgery for a large stone when I was 12 years old, so I have dealt with this basically my entire life. I’m curious, when most of you say you have had or are having “surgery”, are you talking about Lithotripsy, or actual open surgery? I’ve had open surgery on my right kidney, and my left ureter, and can’t count the litho’s!
Personally, I was beyond thrilled to find this article, and to see that it had been updated only recently. This is the first research I have found that confirms in print that YES, MSK does indeed cause pain! AND it spells out why! I can’t tell you how many doctors over the years have told me that my pain was impossible because “there are no nerve endings in the ureters”, or (this one is my favorite!)…..”a kidney stone can ONLY cause pain if it totally obstructs the ureter”. If there were a magic spell to cast that would give these doctors just ONE big ol’ stone, I’d buy it in a heartbeat lol!
Seriously though, my Nephrologist told me years ago what caused this constant, horrible kidney pain……the tiny stones in the tubules and the stones that are trapped in the kidneys without access to a duct. She said they just sit there and put pressure on the tubules, that’s where the pain comes from. Turns out she was right according to this article (RIP Dr. Lewis).
I also have Fibromyalgia, so for these two conditions I am on chronic pain meds. I take Methadone (if you’re not familiar, it is first and foremost a pain medication, also later found to help with drug withdrawal). (So many hear Methadone and think you’re a heroin addict lol!) It doesn’t take the pain away but takes the edge off.
I recently moved to Florida from Pennsylvania, so had to find all new doctors, which is a true nightmare when you have a disease like MSK ( AND Fibro!). Also I think Florida is the worst possible state to have pain in! Due to past trouble with pill seeking drug abusers, doctors here are VERY reluctant to treat with opioid meds.
I hope we all are able to find some relief and especially find compassionate doctors! This journey is hard enough without dealing with cold hearted doctors who accuse you of making things up, or worse, drug seeking! I always say “I’m NOT drug seeking, I’m pain-relief seeking”!
Wishing a low pain day for you all!
Roni in Florida 🙂
OMG I have been told for the last ten years that the stones do not cause any pain unless they are blocking the ureter. That I was a drug seeker I have had over 40 surgeris on my right kidney. Two years ago they found a turmor in the left kidney that is made of blood vessels that cannot be removed unless the kidney is taken out. This site is amazing not that I am happy someone else has this problem but that I am not alone and not crazy/
oh wow i have the same issue like u i live in Florida also got a script from my urologist to go to 20 different pharmacies we dont have it etc. holy crap really was put in the hospital for a week so i totally understand your pain God help us both BTW Pasco county where i am from is the pill capital of Florida yay me!!!!!
As I lay here in the ER waiting to be admitted I figured I would do some research. Found this page. I have been battling this for 7 years now. Since my first son was born. It is pure HELL. I hurt all the time, my body feels completely worn out and I am going on 2 weeks of having a bad kidney infection not treated with at home antibiotics. I passed 2 small stones this morning and brought them to the hospital with me. I lost my job from all this and no longer have insurance. My question is what antibiotics/pain medicine to you all find works best for this condition? Thank you.
Hi, i havent been diagnosed with MSK but my dr said there is very high chance that it could be what im having. My kidneys are packed out with stones and im only 26. My dr is very shocked at how many are in there and how young i am. Im praying for more answers cause im passing stones everyday, fighting infections and im becoming very imune to antibiotics so its getting harder and harder to fight them. I just found out about all this about a month ago. I went to the ER and ended up being admitted and had a 13 by 9 mm stone removed and a stent put in my right kidney. My dr doesnt want to remove it because he thinks i will have to end up getting surgery again if he does. My dr calls me his mystery patient because hes still not sure if this is what i have. If this doesnt end up being my diagnosis i know it will be something really close to it.
I am 27 I found out I had MSK a few years ago I haven’t really had a lot of problems with it but here recently I started having pain in my bladder and pain when I go to the bathroom but it only last for a couple of hours and then stops and comes back later. I went to the er before when it happen thinking I had a UTI but everything came back clean and good. So can somebody please tell me something about what it could be. Thanks!!
hi, i was diagnosed only a year ago and havent yet had any treatment. Ive had many many scans all to show that both my kidneys are full of stones, the specialist i have been seeing has said that the lower back pain is all in my head and i just need a good massage……. Tried that, and it hurt like hell lol.
My symptoms didnt start showing themselves untill i started having children, but then thedoctors still just said its all part and parcel of being pregnant.
Im so glad to here that im not imagining things and that my pain is real, so thank you ladies for giving me an insite to this very unheard of condition.
Sarah 🙂
I would switch drs. My dr is very kind and never says my pain is in my head. Hes very very sympathetic towards my pain. If i were you i would search for someone who will try to find out whats going on. I had a large stone lodged in my tube and it caused alot of pain. And i get pain all the time when i pass stones.
Hi I too have MSK I was born with this disease but the uti’s and pain and being admitted to hospital all the time didn’t start untill I was about 2 years old I moved to aberdeenshire and when I was 19 I was rushed into hospital with cronic pain where I was diagnosed with MSK it took 17 years to disgnose whice made me and my mum so mad I’m now 32 this july and am suffering from cronic pain every day I’m now on 2 types of morphine tablets daily and other pain killers and anti spasmatic meds to try and help I’ve had cameras put into my kidney’s a few times which the doctors found large stones that were being missed by scans and xrays I have spinal blocks and am due in april to get my next lazer treatment my husband is now my full time carer as the pain is that bad I need help getting up in the mornings most daily tasks we have. 2 children who are understanding about MSK and know mummy has poorly kidneys the thing that worrys me is the last 5 times I’ve been put to sleep for an operation on my kidneys I’ve stopped breathing so everytime I get put to sleep I’m heart broken thinking am I going to see my husband and children again it makes me mad people who say oh come on a bit of pain get a grip well all of you on here that have MSK know just how bad the pain is nobody knows untill they go through it I’ve read all your stories and would just. Like to wish all you MSK sufferers very best wishes and hope one day there is a cure for us all best wishes and kind regards to you all from kate and family x x x
It is such a relief to read about other people going through the same crazy issues! My husband calls me a”lemon” because there Is always somethIng goIng on wIth me. My first stone appeared when I was 17 and now at 32 I am a stone expert. I have had so many surgeries since then I lost count. My doc finally explained that I have sponge kidneys a few years ago. I have passed so many kidney stones my mom jokes I should have made some world record by now. Going off hydrochlorothiazide, potassium, and allopurinol to have my 2 beautiful babies made it so much worse. I feel bad there are others going through this too but it is nice to know I’m not alone!
Wow. Thank goodness I am not the only one! I have spent over a year in misery, in and out of hospitals and finally got this diagnosis with my own persistence. The dotors have been amazingly lacking in finding this. I finally found one that was able to diagnose me based on my xrays from august of 2012! So all these months have been wasted on inproper treatment and judgement because of repeated ER visits for pain and infection. I am so upset about that but relieved to have finally gotten an answer other than I am crazy or a drug seeker! Already feeling better and being able to stop taking so much medication. I appreciate people sharing their stories and finding out they are so similar to mine. When this was finally mentioned my 16 year old son was able to access info via his iPhone in 2 minutes yet no one in medicine had been able to figure this out!? Outraged! But moving on. I told my husband i wised I could make something useful like pearls instead! Keep laughing….
I was diagnosed with MSK when I was 20. I have had more surgeries the most 90 yr olds. I not only have MSK,but I had a UPJ obstruction in my right Kidney which had cancer cells when they found during the pathology from the corrective surgery. The year my daughter was born I had 10 surgeries which as a new parent it isn’t fun at all! I am now working on my 3rd urologist since my diagnosis. They all look at me funny when I say I have flank pain. They tell me there is no reason as to why I would have such pain. It gets so hard to hear from them that I could be making the pain up in my head. A year ago the Thursday before fathers day I had 8 stones removed from my left kidney. Half way thru the procedure the machine broke. They had to Stop the procedure and re sterilize the equipment and start all over again. 2 days later I presented to the ER with a 107.8 temp and an acute poleynephritis (a nasty kidney infection). 1 week in the hospital most of it trying to break my temps a whole bounch of I’ve abxs and then a months worth to go home with. Then november hits and I needed another cysto to remove my numerous stones. At that point I was so scared to have anything done! I was so afraid I was going to end up with the same problems. Instead of the machine breaking it now is stuck 2 hours away. They had me all ready to go and ran my I’ve abxs in early (they should be run with in 1 hour of “cut time”) so I Had to have extra. This surgery was the 1st I had since my UPJ obstruction 6yrs prior. So after the surgery my stent needed to stay in for 3 months straight. Around the second month I started noticing I was getting the signs of a uti so I called the DR. His horribly nasty nurse tells me I was fine and it was the stent. After trying to explain to her that I know the difference between spasms from the stent and a uti she informed me I needed to See my PCP. (which totally agravated me)! 4 days later I Was again admitted to the hospital with yet again another kidney infection that now spread to my heart! Needless to say I wasn’t a happy camper with my “new” urologist! After my stent came out I did my own thing for almost a year. I Stayed away from the urologist and told myself I would be “ok”…… Well here I am just out of the hospital with a new stent all because of yet again another poleynephritis and temps of almost 102. I have multiple stones in both kidney again! of course the emergent stent placement pushed the stupid stone back in. So now I will be back to the OR to get the stones out. I wish I could find a clinical trial to be in! I would do anything!! My 7 yr old won’t leave my side because she is terribly scared that her mommy will die from these infections! My body has a harder and harder time recovering from the anesthesia. Not to mention im worried about all the affects my lungs are taking from it all! I will say it is great to know I’m not the only on with flank pain! I pray everyday that god will help people with this disease. It’s not as horrible as cancer is but man it is just as earth shattering but with little understanding! Good luck and god bless to all my fellow MSK sufferers!
I am 56 year old female with MSK disease and I have suffered with it since my early 20’s. I have had least 75 stones removed or I have passed them. I not only have dealt with this but many of stones have been infected stones, which meant vomiting, fever, pain, and all over aching like the flu. I have a lot of burning now I guess my tubes are worn out but then I am too when it comes to this problem. I have taken so many antibotics that I have built up a resistance to them so now when I have infection I have to have an IV treatment. I almost am to the point that I can never leave home for overnight without taking all my meds and never know anymore when an episode will flair up. Take care of yourselves, I feel blessed when I am not having any pain or infection.
I, like many of you was diagnosed when i was 28 years old. I am now 43 years old. I don’t need to tell any of you that it has been pure hell most times with 4 surgeries, my 5th one is scheduled for this Monday. I was discharged from the emergency room on Friday after having excrutiating pain from 2 stones that have been “stuck in my right ureter for over a year now since my last ct scan. When I went back to the hospital to pick up my ct record I looked at the written report (they didn’t seal the envelope) and I freaked myself out and got really concerned about what part of it said. It said that my left kidney is now “atrophic” which means that it is decreasing in size. I haven’t heard about anyone else so far with this problem, if anyone else is going thru that I’d love to hear about that. Urologist and I will discuss options and he said to focus on not letting right kidney to get that bad and to not let left kidney get any worse. I’ve been shocked at the amount of people that I have been reading about with this same condition. I wish you all the best of luck and will be on here quite often I think.
Thank you for the article. I was diagnosed 8 years ago and have been having a hard time finding a doctor or information on this disease. It’s nice to finally see some research results. My problem is that I have been on hydroclorothiazide and I succeeded in getting constant cold sores as a side effect. I mean, a new infection would pop up before the current one was even healed and this was constant over a 6 month period until i stopped taking it. My guess was that considering it is a diuretic, it strips your body of other important micronutrients as well as the calcium and a lot of those are needed to stave off certain viruses and infections? That side effect was not worth it. Also, it’s nice to see that I’m not crazy and the flank pain I have isn’t just in my head. Even though I have blood in my urine, I am not developing big stones right now and my doctor (family practitioner) was completely baffled as to what could be causing the pain. For lack of a better phrase… it sucks! I also noticed on a few of your posts that for one, a lot of us are women, a lot of us were diagnosed in our early 20’s, a lot of us have had kids, and a few of us have had our gallbladder removed but still have pain like it’s still there! I have even had the exploratory (laproscopy?) and they couldn’t find a blockage that would be causing pain. They may just be some interesting coincidences but still may also important factors! Anyway, I hope some more developments are made as far as treatments for this disease and I’m sorry to those of you that have chronic, debilitating pain because of this. I get painful episodes but not chronically. I hope you find some relief!
Hello,
I was diagnosed with MSK when I was 27, I am now 43 and it has been an uphill battle. The worst thing I am dealing with is the constant kidney pain. Narcotics only help for a short period of time and I also don’t like taking them. I have found that having laser surgery the most effective method to control the number of stones and the pain associated with them. The only problem I am having now is that I seem to have this done very frequently which my urologist is not happy doing (too many risks). I would like to know how often is it okay to have this surgery and will the frequency only get worse?? I am on a special diet of low sodium and low (almost next to nothing) animal protein, also no caffine and a few other things. I try and drink a lot, but I find that this aggrivates the pain. anyone with any answers???? I wish there was one doctor out there that was studying this disease souly as I realize now that I am not the only one suffering. Good luck to all of you out there that are suffering from this disease.
Help!
Was wondering if the high fever was part of the passing of the Kidney Stone?
not normally unless you have a blockage. Hope it passes soon for you….been there done that and it isn’t fun!
You shouldn’t present with a fever unless you have an infection. A fever is your body fighting an infection. I have had blockages with some of the larger stones that I’ve had to have surgically removed and i swelled up like a balloon but didn’t run a fever. I could be wrong though.
Youll only have fever with infection
I started having flank pain when I was 17 the doctors took out my gallbladder when I was pregnant then after I had my daughter had my appendix out but I was still in pain. I was diagnose when endiometriosis in 2008. So I was hope that was why I was in pain. After I had my last child feb 2009 I started having severe flank pain I had kidney stones they sent me to a urologist he found nothing. They thought msk was the cause but the test never confirmed untill now. My mother has the disease she was diagnosed when they thought I had it. And now I know why I am always in pain yet I can seem to find anything to help. Heating pads does help. But I am a mom of three young kids and a full time college student can’t walk around attach to a heating pad all day. I am going nach to fix this next week hopefully he can give me something now.
This past summer i found that i was having sever pain in my L back under my rib , kinda felt like the tip of a boot was stuck under my back rib but this seemed to usually occur at night when rolling over to switch positions . It has bothered me during the day as well . This was a 3 week on going thing and then out of no where i ended up with a high fever close to 102 for 4 day’s! I laid on the couch w/ wet wash cloths and it felt like i was dying!!!
I just went to the doctors to get a CT scan for something else and it came up that i had this disease . My brother said for me to stay away from milk products and drink lots of fluid .
Was wondering if you ever experienced any of this? I should say too that on the 3rd week i had a test done to see if i was passing kidney stones and it came up negative . Weird !
I too suffer from this disease….diagnosed at 27 and now 43. The only time I suffered from a fever with it was when I had a stone blockage. Pain has always been a problem only laser surgery has really helped me. My brother has it too, but no one else in my family seem to have been diagnosed with it. Good luck to you and hope you get more answers than I have!!!
Your story sounds a lot like mine! I hope they figure out something to help you with the pain :-(. I have the pain as well, usually just affecting my right side, but it goes away after 2 to 4 weeks and just comes back randomly. My family practitioner was completely stumped as to why I was in pain and not developing large stones. Now I know! Best of luck to you and take care!
Hi my name is Sara I’m 20 years old I was diagnosed with MSK at 16. I’ve suffered from severe kidney infections, kidney stones and UTIs since I was 10. Finally I found a doctor 2 hours away from home who could tell me what was the cause of all this pain. I have infections and terrible pain most days out of the month but the worst was just recently during my pregnancy. I was passing out every time I stood up suffering from terrible pain. One night I had a 103 fever so I went to the hospital to find out my kidneys were completely blocked off I went into surgery to have a tube place into my kidney from my back to drain all the infection out. The last 6 months of my pregnancy I had a Nephrostomy tube. I had so many infections and stones I had to receive surgery every 2-3 weeks to have my tube replaced because it would get blocked up from so much infection draining out. I had to have my son early because of all the problems. I still suffer from MSK and I deal with terrible pain all the time. I have no cure, no help with the pain but I’m glad my son came out okay and healthy and hope research continues on this disease to help those like me that live with MSK.
I have been dealing with msk since I was 14. I have passed hundreds of stones, infections and bleeding. The worst part was when I had a dime sized stone! I was fine then urinated,started passing out and burning up. My kids had to keep me revived until ems arrived. One other time I started going into cardiac arrest but luckily I was already in the hospital. The say the feel this is NOT hereditary? I have an 18 year old daughter going through it already for 5 years now and a 15 year old son starting to show signs. I have tons of remedies and stories
Hi there, my husband has many of these symptoms, how were you diagnosed? Please share any treatments you feel were helpful.
Gerti
I was diagnosed after being rushed to the hospital and receiving a CT Scan which showed hundreds of stones in my kidneys. It was a fast way of finding out and I was thankful but unfortunately there was nothing they could do for me.
I was recently diagnosed with MSK and I would LOVE to hear of some home remedies for pain/relief form these stones!!
Buy a heating pad, it works wonders for me sometimes! Heat has always been the best I find, also drinking cranberry juice or taking cranberry pills can help and A LOT (2 liters min) of water every day. Avoid salty foods and foods high in oxolate (tea, coffee, etc).
I was diagnosed with MSK 9 years ago. I get UTI’s & kidney infections every couple of years and I had several stones 2 years ago. My flank pain is several weeks out of the month. I have just returned from the kidney doctor with yet another UTI/kidney infection. Problem is this time the NP that saw me had never seen me before. When I told her about all of my flank pain she said it was muscular, and to give the antibiotics a few days to work before doing a CT scan and before she would consider giving me any Toradol for pain. I know what kidney pain is and what stones feel like. All of us on this site know what that specific pain feels like. All I asked for was Toradol hoping it would help, also in an attempt to avoid the narcotics. Instead, I have to take the antibiotics until Tuesday when I have a follow up visit. I am frustrated with the fact that some doctors either do not believe you or do not believe in treating pain. I am stuck with heating pads and Advil unless the pain gets too bad to tolerate and it forces me to visit the ER. I hope it does not get to that point, but it really hurts. I appreciate this site SO much! It was such a blessing to find this site and read about others who suffer the same way I do. Thank you all for doing this and putting your stories out there. We can be secure in the fact that we are not “crazy” and find support from each other. I pray for you all every day and if I can help anyone, please let me know.
Hi everyone my name is Shannon and I was told I had this horrible disease 2 years ago. I to have constant kydney infections, pain, fever, nausea, ect. It is getting to the point that I have no energy and have a hard time just getting out of bed some days I do have a med card for cannibus and it does work but I can’t be smoking it at work and I don’t want to go on any harsh pain medication either does anyone know if disability will approve you with this disease I still want to work but not full time im soooooo tired of feeling tired please can someone help. I use to be a real active person and now I just feel like crap is there any thing I can do.
Hi everyone i am Daylene i am 31 and have had msk since i was 16.. i was misdiagnosed till i was 25 when my family doctor finally realized what was going on.. i had sooo many kidney infections and urinary tract infections between then.. i have very narrow ureters i seem to be in pain daily weather it be sharp excrutiating pains or just the dull gross feeling in my sides and back or the cramping i get regularly… I miss alot of work because of the way that this illness makes me feel i am also bipolar on top of this problem which only makes it worse… my family doctor is a joke.. hes a walk in clinic doctor who has to look at a computer just to know my name and yet hes supposed to be my family doctor? I moved to edmonton Alberta over 7 years ago because i lived in fort st john and there was no urology department there.. i moved here because this was where my urologist is yet.. most of you seem to be taking something to help with the formation.. i am on nothing.. i take toradol and smoke pot for my pain and drink tonnes of water and avoid phosphates and sodium like the plague.. i still have a morning coffee but it seems to make my sides hurt so i usually end up drinking triple that in water just to flush it through. When i first moved here my urologist wanted to do surgery every 6 monthes but because i have managed my pain so well it has been 2 years since my last surgery, but lately ive been very very uncomfortable and in a substantial amount of pain so we did the CT scan now i wait……. This is a disease.. it is a nightmare.. i dont wish this on anyone and i wish there was a cure…. The hunt continues for a doctor who really cares.