If you want to learn about MSK or kidney stones in general, you’re in the right spot. Personally, in my 8 years of dealing with this disease I’ve never found such an informative and supportive website produced by physicians. As a contributor to the website, I will be writing occasional Patient’s Perspective Posts. By doing this, I hope to make you feel less crazy and alone because I know it’s a scary diagnosis and disease.
My posts will aim to give you ideas on how to manage your MSK physically and emotionally, from a patient’s perspective. I’m by no means an MD so please consult your physician before trying any of my ideas. I’ve learned a lot about the different diets, pain management methods, things to drink, what to avoid, and simple ways to make yourself feel better and I can’t wait to share them with you. I also want to discuss the dire need for more research on this disease, as a lot of information currently out there is old and/or inaccurate.
But first, I’d like to tell you a little about myself.
I’m Kayla, a 24 year old girl from Minnesota who was diagnosed with Medullary Sponge Kidney (MSK) when I was 16 years old. Apart from living with MSK, I try to lead a somewhat normal life. I graduated from the University of Minnesota with my Psychology BA last year. I’ve worked in medical/public health research for many years, and am currently working full-time on an obesity-prevention/healthy behavior promotion study called HOME Plus at the University of Minnesota as the Project Assistant and Evaluation Coordinator. When I’m not spending time with my couch and heating pad, I enjoy going to the beach with friends, shopping, and trying new places to eat.
As I mentioned previously, I was diagnosed with MSK at 16 years old after I was rushed to the ER in extreme pain one summer. My mom carried me in because I couldn’t walk, and on a pain scale of 1-10 my pain was an 11. This was my first experience with a stone, and because of that I was admitted to the hospital for 2 days for fluids and pain management. We thought it would be a one time ordeal, but we were wrong.
My next experience was exactly one year later during the summer. I woke up with the worst stomach ache that only got worse as the night went on. I couldn’t walk again from the pain, I was nauseous, and had a high fever. We went to the ER again and I was admitted for 4 days with a nasty kidney infection.
I was referred to a local nephrologist who put me on a slew of medications and told me to “drink, drink, drink!” None of it helped. During one of my many CT Scans, my nephrologist noted my kidneys appeared to be spongey and was diagnosed with MSK. She said it was a “benign” disease that would not give me any troubles.
Since then, my MSK has only gotten worse. Now my stones, pain, and infections don’t only happen during the summer or twice per year; they happen every month. In 2009 I was blessed to see a local urologist who not only believed me, he was willing to help me. Dr. Manoj Monga at the University of Minnesota was the first doctor to acknowledge my pain and give me options. I was scheduled for two surgeries (one on each kidney two weeks apart) in summer of 2009, which went amazingly well and we removed 9 stones total! They put stents in following the surgeries and let me tell you there is NOTHING more excruciating than a stent! Peeing is the most painful and awful experience ever with a stent! Even though recovery was difficult, I actually was stone and pain free for a year and a half. It was some of the best time of my life since the diagnosis. I followed a low-sodium, high calcium, lots of water regimen (probably not as closely as I should have, but hey – I felt good!)
Sadly, as with most MSK patients, my stones formed again and the pain and infections came back with vengeance. Dr. Monga had taken a position at Cleveland Clinic and I was left with a urologist who didn’t know what the heck to do with me. We decided to do the same surgery minus the papillotomy in the summer of 2011. It was the biggest waste of time and I regret doing it every day. He only removed 1 stone because the rest were too imbedded in my kidney. Since that time, I’ve been horrible. I have extreme pain every day and I have a UTI every month even though I am on a daily antibiotic. At this point, I’m simply existing and managing my symptoms the best that I can.
I’m basically an 80 year-old woman in a 24 year-old’s body. I come home from work and sit on the couch with my heating pad and pain pills. Without narcotic pain medication, I couldn’t make it through the day and I hate that. In my next post I’ll discuss how annoying it is to not only be taken seriously and not as a drug-addict and on how challenging it is to actually get help!
I hope you found some use in my story, and know that whatever your story is you are NOT ALONE. I mentioned I created a Facebook Group and I encourage you to check it out and join: http://www.facebook.com/groups/Spongelife/
I can’t wait to hear from you and continue writing on KidneyStoners.org. If you have any ideas on what to write about, feel free to comment.
I also made a really ridiculous (thanks, pain medicine!) YouTube video that people seem to really enjoy about my daily battles with this disease, from kidney stones to kidney infections to unexplained daily pain, and my plea for more research.
[youtube]http://www.youtube.com/watch?v=V7aSH-WYExU&list=HL1338481237&feature=mh_lolz [/youtube]
I was also diagnosed today – wow!
Thanks for sharing your story, I really appreciate it.
I was just diagnosed with MSK today… I’m scared. don’t know what’s ahead of me. I still have 4 stones in my kidneys I have yet to pass.. I want info.. lots of it. I’m a bartender and sometimes after a hard nights work me and my co-workers will have a couple drinks. Am I allowed to do that? I mean… I’m 21. No sweet tea? I live in the heart of Dixie for crying out loud… I love my Cokes and sweet tea. I am having to make such a huge change in my life and I’m scared y’all… Someone help me out
I’m leaving my Facebook link below so someone please message me with info
Facebook.com/real.Rodgers.1
[…] Jun 3, 2012 … Medullary Sponge Kidney: A Patient's Perspective …. Marshmallow root tea and a diet hasn't helped much and I don't know what else to do with … [more] […]
Hi I have had MSKD since I was 21, I’m 47 and have lived a fairly normal life. I have a wonderful husband and two beautiful teenagers. I was very quickly put on a water tablet which seems to have kept much of my pain away. I have had numerous amounts of operations, stents and nephronstomies, but all in all I have very quickly got back to living. I am seen by my consultant every 6 months and have x-rays and scans so that if there is anything we can act quickly. I do however feel 8o years old after work as a baker, with my legs and back in agony also for some reason my achilles heel. This web page is great as it is nice to hear that other people share something rare with me.
Reading all of this just makes me cry, I’m also glad I found this although it will not fix anything, I’m glad I’m not alone, age 32, first kidney stone at 19, over a dozen surgeries over the years, over a doven stones passed on my own, tons of emergency surgeries due to blockages. No Dr are helpful, I’m on no pain meds, still going to work everyday, depressed and I. So much pain at times I’m vomiting. I’m so fed up, I feel like I’m 80, my body feels like its slowly dying and there’s nothing I can do to stop it.
I was diagnosed with MSK when I was 32 following an attack of renal colic and the passing of a kidney stone. After x-ray I was found to have approx 20 stones in each kidney. I am now 65 and have continued since that time to form stones and to pass them. I have been regularly prescribed Demerol for the past 33 years to deal with pain. I am very conservative in my use of Demerol knowing it’s addictive nature, but have to use it when I have agonising pain on passing a stone but also when I have severe intermittent pain which I have been told is due to passing gravel. I am also prone to heavy aching and sharp stabbing pains from the stones in the meat and the calyces of the kidney. This is often not recognised by Doctors unfamiliar with MSK.
I have undergone lithotripsy, Utereroscopy, PCNL (Percutaneous Nephrolithotomy) and finally open surgery consisting of Renal Denervation, Pyelostomy & Pyeloscopy. All these procedures only resulted in the removal of 6 stones because of abnormalities of the kidneys due to MSK.
MSK for me has been a lifelong problem that has interfered greatly with my daily living. I fully understand other’s comments regarding many doctors treating you as drug seeking or exaggerating pain levels. It is not just when a stone is in the ureter that pain is caused, Stones and calcium deposits in the kidney itself CAUSE PAIN! Passing gravel irritates the ureter and can cause agonising renal colic spasms. I can only hope that this fact is universally recognised at some point, and is not dismissed as at present by many doctor’s cavalier and intransigent attitudes.
I was diagnosed with MSK when in my late 20s, now I’m 49. I had several painful experiences with passing stones, dull aching for days and weeks then acute pain as many have already described. Fortunately I’ve only had one blockage about 8 years ago and no UTIs. I have been relatively stone free since that episode until about 6 months ago when I started to shed more stones. The pain is nothing like what I experienced when I was younger. My GP has just prescribed me Galebon. I will let you know how effective it is in due course but a quick google search showed lots of stone sufferers being able to pass stones quickly and without pain.
I’m glad i found this website! I’m 17 years old, and was diagnosed with MSK and lupus when I was 16. I was going to major Children’s Hospitals for about 8 years, and they didn’t offer anything but pain medication. So far I’ve had about 7 kidney stones. However my flank pain is growing worse and worse each day. Marshmallow root tea and a diet hasn’t helped much and I don’t know what else to do with the pain. I had to get on a birth control to take away my periods 2 years ago because the inflammation caused me so much discomfort and pain.
Hi, I also Have MSK. My 1st stones were at the age of 15, a few one after another. I was diagnosed at 28? I was always t old that it was a benign condition!! Yeah right… The Doctors have No idea what the condition leads to. Besides the pain and UTI’s there’s a condition called dRTA and Nephrocalcinosis ? It’s when your kidneys don’t filter the waste out of your body, it filters it back into? your system and If not treated you go into metabolic acidosis…may lead to death! I was wondering if anyone else suffer from this
I am Maureen and have had 8 obstructed Kidney stones over the past 10 years…Life is not the same. Today I was having right flank pain similar to stones so I dragged myself to the ER after 4 days of debilitating diarrhea. After a CT scan I was told to, “Please collate clinically for MSK.” Basically I stumbled upon this in the report the ER doctor said, follow up with your doctor in 2 days. I was more considered about the multiple lymph nodes they found in the lower right quadrant and didn’t even read that part of the report. Yet this explains the Kidney pain I am having. Not sure how I feel about this.
So thankful to have found this page! I am 32 years old and had my first experience with kidney stones 10 years ago. Even after getting them out through laser lithotripsy, I still experienced an almost nonstop chronic dull cramping ache on both sides of my back. Sometimes it was sharp excruciating pains that would come and go, but the dull ache was always there. I was told by my urologist at the time that he cleared the stones out, so I should not be in pain, and he did not know what to do with me. That was the first of a long string of “you don’t have any obstructing stones, so you shouldn’t be in pain” lines I would hear over the years. Any CTs I had on my abdomen over the next few years would always note that I had multiple stones present in both kidneys, but none obstructing. I had laser lithotripsy 2 1/2 years ago to clear out some stones after the daily pain got to be too much (and I agree–stents are the devil’s work…utterly HORRIBLE) and again about 5 weeks ago, each time removing several very small stones. This last time around I finally found a urologist who was willing to listen to me. I broke down in his office crying, saying I was tired of going to the ER and being treated like a drug seeker and told I shouldn’t be having pain. He did some tests and an IVP, and gave me an official diagnosis of MSK. While finding out you have a incurable chronic disease is never pleasant, I was SO relieved to finally have answers and to know I wasn’t crazy.
I’m in the same boat 🙁
Hi, I am 44 yrs old. I was diagnosed in 2012 with MSK. Every time I go to emerg with a kidney infection I have to educate the nurses and typically the doctors with what MSK is. I was back to the hospital two days ago with a kidney infection, so back to antibiotics- which also constantly requires me educating the docs about how to treat me as I can’t take sulfa drugs or penicillin…
Feeling miserable and in pain and most likely back to the hospital tomorrow as the pain increases and I am feeling worse…
Wish they would just consult urologists when I need treatment so someone knew how to help….
Hello. I do not know if people still comment on this thread but I thought I would give it a try. I went to the er yesterday for yet another kidney stone. The dr told me that I have calcifications on the openings of both my kidneys and have what he called spongiform kidney disease. He then says he doesn’t know anything about it and for me to see my urologist. I dont know if msk and spongiform kidney disease are the same or what is going on. Thought I would try and see if I could find out before I see the dr.
Wow, I thought I was suffering with this all alone and was diagnosed with MSK 10 years ago. I also have 2 ureters on my left kidney and one on my right which all are functional hence constant UTI’s, I have kidney damage from an infection that was wrongly diagnosed. I have stones in both kidneys that are not quite big enough as of yet to do anything about! Constant pain on my right side and I am so tired of it and can’t imagine living with this when I’m old! Some days better than others but it’d hard to shake the exhaustion of this disease! I hope you all well and strength to get through the hard times and hopefully we can get some answers and or relief in the future!
Wow, and I have thought I was suffering this alone!! I am 41 and was diagnosed about ten years ago with MSK, I also have three ureter’s, two on left and one on right, stones in both kidneys and constant pain, always tract infections. I always have pain in my right side! I have had so many tests and hopefully after a new urologist today things may get better! I’m tired of antibiotics that make no difference and may possibly cause me to be immune in the future! I sympathize with all dealing with this strange disorder, however, now I know I’m not alone! Please keep us updated on anything that makes a difference and or relief!
Hello all! I just found this site and I am so sorry others suffer from this horrible disease. I wouldn’t want to wish it on anyone, but as bad as this sounds I am glad I am not the only one. I am 38 yrs old, I was diagnosed at 30 yrs old but I have been suffering from MSK for many years just no one could tell me what I had. I have multiple medical issues so they just told me it was due to one of the others, then finally I got an answer. I am dealing with the same as the writer of this page. I have been to the Dr. and to the ER many time and I am now considered a drug seeker. Even with the actual diagnosis I have been told it will not cause any harm or any pain, but honestly I think they just don’t understand the disease, cause just like y’all I know it does cause pain and all the time. I have a slightly different type of MSK though, I know there are different types. Some get infections, stones, cysts and what not, mine is an actual calcium build up where there is a wall of calcium as well as the spongy kidney. Like I said I am so sorry to see y’all have this as well but I am glad I’m not alone. I do hope they can figure something out so help us be more comfortable with this disease, I am searching for a Dr. that will be open minded to listening to me about my symptoms and not just telling me what they think they know of MSK.
I was just diagnosed last week at 29 years old after about 4 uti this year and finally a kidney infection that rushed me to the ER. Im terrified of everything i been reading, i have experienced painful urinary track infections and i have seen blood in my urine but i have no idea if my passing the stones , i have a lot of stones in my kidneys, more in one than other and i just have never seen them . I just started seeing a nephrologist and will see a urologist soon. How you know when u are passing the stones what are the symptoms ?
I’m a 41 yr old woman who was diagnosed at 16 after a 3mm stone was logded in my urethra. I have had lithotripsy 3 times and I have had over 120 stones removed in several procedures. I have had countless uti’s. I had a great group of doctors who used to take care of it but, in Oregon things are pretty bad, as far as finding competent treatment. I was doing very well until I lost my med coverage. I had the pain and infections under control with liquids, diet and a pain mamagement regiment. But when I was given a new internest he took me of everything and said unless I have a blockage I shouldn’t be in any pain of any kind. Now everyday is a living hell as I live with constant flank pain and colic and spasms. I guess since it doesn’t affect them it doesn’t matter.
I have had many doctors tell me for years that if the stone is in the kidney..it doesnt cause pain. I also have sponge kidneys. They give me the same answer. Years ago i was switched to chlorthalidone from hydrochlorthiazide for fluid by nephrology. It has help alot to keep the stones from growing.
In may I had my one and only baby then soon after I was getting very painful pains couldn’t even sleep at night went to doctors and they gave me a ultrasound well it came back I have the sponge kidney in both of them go to a specialist soon to hopefully get this figured out since my regular doc has no idea about it
@ Anne-Marie I find my pain is more before my period too!!! I was diagnosed at the age of 30 and I have passed at least 32 stones! Talk about pain!!!!! I am glad to find I’m not alone in this. I thought I was the only one in the world. I have not found a nephrologist to help me, the last one looked at me like I was a two-headed monster when I asked FMLA papers due to the recurrent and frequent stones. He did give them to me and I only used 1 day of FMLA!!! He also told me to manage the pain with Tylenol or ibuprofen, how sweet of him :-/
YOU CANNOT use NSAIDs (ibuprofin asprin ext) when you have MSK….DO NOT listen when they tell you to use them, as a matter of fact, tell them to do their research they may be doing you damage.
Yes! Finally someone writes about kidney stone pain.
Hi all,
I too have the dreaded MSK, have suffered issues since I was a baby and when I was expecting my own baby suffered with the first kidney stone ! and ever since that I am on the clock to get the lithotripsy, I have a wonderful nephrologist who is brilliant and am ready to see a new urologist soon, I am doing good at the moment but the stones are growing by the day and I am terrified having to do the lithotripsy again as my kidneys didnt like it so much the last time, it wrecked my BP ! but I am thankful as I know that I am lucky enough not to suffer pain every day with this disease, it is a genetic thing as I have my father and 5 cousins who all had kidney issues.
Good luck and try to battle on another day.
Hi I’m 27 and had my first dose of stones at 22 which caused partial kidney failure and my left kidney went down to 20% function due to being obstructed by a bothersome stone and I was in hospital a week. I then made a full recovery and had bad pain on and off for years until two months ago when I was back in with the same thing 🙁
The doctor mentioned kidney disease but I was to out of it on pain meds to take it in. He said I’d passed all the stones but when I got hone I passed many more (at least five) which worried me a lot as the pain was worse than ever due to a complex infection that was also present. It took weeks to recover and I’m still having hours of really bad pain but msk doesn’t seen to be recognised by NHS doctors! Does anyone from UK have any advice? Or any advice from all countries would be greatly received as I’m at end of tether with this constant pain! And even prescribed painkillers aren’t touching the pain ( tramadol, diclofenac, as well as paracetamol)
Also does anyone else find the pain worse before and during a period?
Thanks x
I’m glad to have found this sight and as a sufferer of kidney pain from MSK, I feel empathy for all! I would rather have my twins again! I’m so sorry for the amount of true and unbelievable pain you are dealing with. I hope research will teach physicians more about the symptoms, and pain MSK sufferers deal with on a daily bases. I am a 38 yr old mother of three, and would love to have a day without pain. My nephrologist has tried many things but because of the lack of knowledge we are at a dead end for now. Take things day by day and don’t give up trying to find a physician who is able to think outside the box! Best of luck to all!
So glad I found this site. Just diagnosed last night with MSK and I am not really sure what to think. I’m scared but seeing that I’m not alone makes me feel so much better. Thank you for your stories!
I am sorry you have been diagnosed with this dreaded disease, I know its hard not to be scared but you have to take each week at a time and sort out each episode at at time and thats all you can do really, watch your diet and drink loads of fluids and keep positive. Good luck.
I went into my doc the other day for upper abdominal pain and she ordered an ultrasound. They called me today saying they didn’t know why I had abdominal pain but did I know that I had MSK? After explaining it to me, it made me realize why I was constantly getting stones. Same as Laci, I’m just now researching this and hopefully can figure out a diet to help reduce stone formation. My last stone was blasted almost 2 years ago and no problems since then, so I’m hoping I can stay stone free for a while.