Living with Medullary Sponge Kidney (MSK)–the Patient’s Perspective

Medullary Sponge Kidney (MSK) ribbonMy how time flies when you’re having fun… or is it when you’re in pain? My last post almost two whole years ago touched on my experience with MSK and how I was coping with it. Let me tell you that things have most certainly changed since 2012. I am proud to say that I’ve managed to stay out of the Emergency Room (ER) for just under a year and a half at this time. Considering I was making the trip there almost 4-5 times per year, this is a great accomplishment for me. The main thing that has changed since then is that I’ve learned to accept certain aspects of MSK and after 9 years of searching I’ve got a great medical team on my side managing my pain and the progression of my MSK.

Kayla Dean

Kayla Dean

My partner MSK Advocate Mary Maston and I recently sat down to talk about what living with MSK is really like and some tips that we’d like to share with you. We think that you’ll find them valuable if you’re newly diagnosed, a few years in, or an old “sponge” pro.

It is important to note that our tips come from years of personal experience with MSK and may not be what you are experiencing/have experienced. Always talk to your healthcare team before stopping treatment plans or adding anything new. 

Mary Maston

Mary Maston

Living with MSK tip #1

Be careful with how many surgeries you choose to have done. At this time, there are no cures for MSK and there aren’t any good treatments either. Most patients face having surgery done at least once in their lives and many more must decide on having it done multiple times. The surgeries that are most commonly done for MSK are Lithotripsies and Ureteroscopies. Both remove stones different ways (Kidneystoners has awesome information on this—be sure to check it out here). At the age of 26, Kayla has had 3 Ureteroscopy Papilotomies done. In 2009, the urologist cleaned out both kidneys completely. By 2011, the right kidney had already grown just as many stones as was removed in 2009 and was cleaned out again by a new urologist. During the last CT scan in 2013, there were twice as many stones in both kidneys. Mary is 39 and has had a total of 14 surgeries since the age of 13, both Lithotripsies (which were unsuccessful in her case but that doesn’t hold true for everyone), and Ureteroscopies. Eleven of those surgeries have occurred in the last 8 years with the last one being done in 2012, and her kidneys are still full of stones and extensive Nephrocalcinosis, and large cysts have started to form. Surgery may be a necessary evil for some MSK’ers, but for some it’s more of a costly and time-consuming temporary maintenance solution than a worthwhile treatment.

Living with MSK tip #2

At a certain point in your life, you do come to realize that “this” is your new normal. You have to accept it, even though it’s hard to do. Whether you suffer with seemingly non-stop infections, passing blood, sand, and/or stones on a daily basis, and/or the constant and never ending pain… it’s important for your sanity to find ways to cope with it. MSK is a progressive disease and will be with you for the rest of your life (KidneyStoners has one of the most comprehensive and accurate descriptions of MSK here). You will have good days and you will likely have bad days and it sure isn’t fair, but we must move on. We all have our own battles and it’s easy to get depressed or caught up in it all. It gets to the point to where family and friends just don’t understand. It takes a huge physical, emotional and financial toll. That is why it’s so important to have a support system in place that can help you get through those times, and whether you know it or not, you already do. We have worked hard to create a safe, established Facebook group that was started in 2007 for these very reasons here. For 7 years we have been helping people cope with MSK on a daily basis with everything from advice on how to talk to your doctors, information on procedures and diet suggestions, to just being there and offering support when you need to vent. As admins of the group, we want you to know that YOU and what you are going through personally are the priority and always will be.

Living with MSK tip #3

With all that being said, it’s imperative that more legitimate research be done on MSK patients. At this time, there is no MSK research being conducted and only a handful of publications on PubMed.gov about MSK.  The literature and general consensus about MSK needs to be changed for MSK patients to ever lead a quality life. We can’t tell you how many MSK’ers we hear from each day who tell us that no one believes them and that doctors won’t take them seriously because they either think they’re drug-seeking or think that they are lying about their symptoms. We hear from so many patients that have switched doctors many, many times searching for just ONE that believes their pain is real and is willing to take them seriously. Unfortunately this looks bad to doctors and hospitals, and it makes patients feel like they’re crazy because they can’t find anyone in the medical profession that’s willing to help. That is why new and reputable research is so vital.

Living with MSK tip #4  

You are your own best advocate. It isn’t always easy to do when you feel defeated, but you should make it a point to educate yourself about MSK so that you can effectively present the information to your doctors. That in itself can be an overwhelming task because most information is outdated and likely much different than what you are experiencing. We have been working to change that in the last several years, and have made some tremendous strides. We do have some information that you can share with your doctors in our support group. It also helps if you can find a family member or friend that is willing to advocate on your behalf that is willing to stand up for you if you have to go to the ER or even at a routine urologist appointment. If you understand the disease and can explain it effectively, doctors often seem more willing to listen and help.

We believe there are better treatment options for us on the horizon; they just need to be explored and studied. That is why we are pushing so hard for new research. If MSK were better understood both by medical professionals and the general public, patients and their families would have a better idea of what to expect and how to deal with it. It’s time that we recognize it for what it is, and it’s time that we are treated as MSK patients and not typical kidney stone patients because we aren’t “typical” kidney stone patients!

In the meantime, there IS hope for patients who are struggling. Our support group is a lifeline for hundreds of people who are struggling with living with MSK day to day. We empower MSK patients to take an active role in their care by providing relevant information and providing the crucial support that is so desperately needed. We have grown in the last 3 years from just a handful of people to 1141 members from all over the world, which is a staggering and powerful jump for a rare disease that is labeled as benign. If you have MSK and are interested, you will find comfort in knowing that you are not alone, you are not crazy, and there are people willing to listen to you. You can join the private and safe group by following this link.

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22 Responses to Living with Medullary Sponge Kidney (MSK)–the Patient’s Perspective

  1. Catherine Roche says:

    I really want to thank you for your story i have m.s.k. i have 13 stones right now from 12mm all the way up to 1.4 c.m to 1.2 cm i am so tired of going to the hospital and crying in pain and being called a drug addict cause all i hear is they only hurt when they are coming out .and thats not true when you have a bunch of them they hurt .

  2. Jennifer Dixon says:

    Hi, I’m 32yr female, I’ve just been diagnosed but it came to its most serious head about 18months again and it was mistaken from prematurely aged kidneys, 8mm kidney stone was found too, this time it was just a nauseating kidney infection, but what I am struggling the most with is the exhaustion, does any one have any advice on how to recover and rebuild energy, I am so tired, I have my appetite back, but it took about 3 weeks from the last out break, does any ones bowel movements slow down too? I can’t tell what’s fueling what? The exhaustion, the constipation or the reminence of the kidney infection. Or the crystals that at still in my kidney? Head aches are terrible too

  3. Bobby says:

    My wife has medulla sponge kidney. She produces stones like a rock quarry!!! I feel so bad for her she been to many urologists but no fixes other than removing her kidney but problem is both kidneys are full of stones! She has passes sum as large as “CORN KERNELS” I can’t remember for sure but I think it was 13-14 mm. But no matter the size there all bad. While pregnant with our last 2 kids they was very bad she ended up having 1 stuck during both pregnancies and had to have a nefrostemy tube put in and a pee bag to relieve pressure off kidney until babies was born. She’s had this condition since she was seven years old and sum weeks passed numerous stones multiple at times. Many surgeries lithotripsy seems to work the best/easiest on her but just temporary solution. I would love to be able to take her pain away!!! Sum1 plz find a cure for this problem or at least a way to make them turn to jelly or sand like substance. Thanks

  4. Jessica says:

    I have been diagnosed with MSK since I was 18, I am 21 now. I am currently a Certified Professional Coder at my local Hospital working 40+ hours a week. I am also a full-time college student finishing my two year Associates Degree in Medical Information Technology. I am also trying to find time to work out 2-3 times a week as well as taking care of my house. I don’t have any kids yet, but I almost dread that time of being in constant pain when it should be the happiest time of my life. Here recently, I have encountered pain almost everyday. As of Saturday November 12th, I have passed 13 stones (that I know of). I have days where I feel okay, but most of days consist of pain. I have a prescription for pain medication, but I try to stick with ibuprofen, which I know isn’t good for my kidneys, but I try not to stay medicated due to driving and trying to be a socialable individual. I also deal with chronic fatigue where I constantly feel tired. Everyday is a struggle to wake up in the morning on time for work. I go throughout my work day tired and wanting to take a nap. I constantly try to drown out the pain in order to make it through the day, but I also have to worry about being extremely tired. When my work day is about over, I’ll catch a second wind, but I’m also ready to go home and crash out for a nap. I’m glad there are other people with MSK, as I feel alone most of the time even though I have a good support system. I just feel as if I’m trying so hard to stay on top of work, college work, house work, socializing, and with my eight-year relationship. I struggle daily and have found myself fighting depression on the daily. Sometimes I feel like I’m the only one.

  5. Dawn says:

    My daughter had her first kidney stone at 12. She has suffered ever since.She is 16 now. She has had 3 surgeries and seen several doctors. We are in the ER at least once a month. She is so stressed. She misses alot od school and school activities. I feel so helpless.

  6. Gail says:

    I was diagnosed in 1993(ish) because I was throwing stones while pregnant with my first. Nothing like feeling like you’re in labor constantly. Anyway, I never sought treatment and have just been “dealing” with it because I don’t like to take medicines or “make a fuss”. That being said, over the years I have passed stones and have had back pain which I attributed to just getting older and felt that I had to deal with it.

    Recently, I was diagnosed with Osteoporosis and I’m not even 50 yrs old. A doctor friend made the connection that MSK causes osteoporosis and so began my journey again this week w/ the 24 hr urine collections and renal u/s. The u/s yesterday was fascinating, I saw the “spongy look” the tech was fascinated and my doctor friend agreed that I have MSK and has sent me to a nephrologist to treat both the MSK and the Osteoporosis.

    My suggestion to everyone is please watch your bones, you don’t want to have a pathological fracture before 50 because of Osteoporosis caused by MSK.

    I suppose now I can admit the lower back pain that is in my kidney region is really MSK and admit to myself that I need help.
    Thanks everyone

  7. Sandra says:

    Didn’t know this sight existed till now. My first bout of stones was about 9 years ago, on the subway, on my way to work. A co-worker took me to the emergency room, was given a pain prescription and passed them within a few days without a problem. My second about was about 4 yrs ago and was referred to Dr Grasso of Lenox Hill Hospital, New York City, who recommended nephralogyst Dr Goldfarb, also of LHH, who is extremely knowledgable and fast tracked me on a daily regiment of potassium citrate, 2 tabs 2x’s daily. This past November, I did a Litho Link (24 hour collection of urine) and Dr Goldfarb was sent a report of the findings. I followed up with a visit for the results and he said he was increasing the dosage to 2 tabs 3 x’s a day, a total of 9 tabs daily. My concern was over medication, and so I did a little research and discovered there might be a slight chance of developing diabetes, but not much else. Leaning on the side of caution, and against the recommendation of the ‘good doctor’ I decided to continue to take 2 tabs only 2x’s daily. So far so good. Thought I would share this, as I’ve not seen a posting regarding anyone being recommended medication for this condition. Now, if anyone could just find a way of controlling ones bladder without meds.

  8. Robin says:

    I was diagnosed with MSK 22 years ago following 4 long years of constant kidney infections & stones. I spent the next 13 years dealing with the stones & having lithotripsies done when I absolutely had to. The last 8 years has been much easier despite all the stones in my kidneys & also being diagnosed with IC. I started taking a prescription diuretic & was placed on a low sodium, low calcium, no caffeine, no alcohol, & high water intake diet. By taking medication & following the diet provided by my urologist, I haven’t passed a stone in almost 8 years. That doesn’t mean I’m pain free because that I am not. I still deal with the pain & some days are definitely worse than others but I have other chronic pain that has overshadowed that of my kidneys on a daily basis, unfortunately.

    Knowing more research is finally being done is a welcomed gift because 22 years ago, virtually nothing was known about MSK other than there being no cure. Basically nobody had heard of it & even though that hasn’t changed much, a little change is better than no change.

    Good luck to all those that suffer.

  9. brianna says:

    I’m 18 years old. I was just diagnosed with MSK..just a few weeks ago I was experiencing symptoms which we thought were just the flu. I had extremely high grade fevers, vomiting early in the mornings and sore back. After many visits to the doctors we finally found through an ultrasound that I had kidney stones. A urine sample also showed that there was an infection. I had my first kidney infection when I was 8 years old however I was never diagnosed with anything. The pain I had through out the past week have been almost unbearable and my heart goes out to all of you who might experience this daily. With my condition right now I feel as though I am one of the lucky ones. It’s my first year of university and missing almost 2 weeks has made it very stressful but for those who have careers and families I cannot imagine….I will be further researching MSK

  10. Kirsty says:

    Thannkyou for writing this, thow it hit me quite hard the comment “this is your new normal” I knew there was no cure, but reading that , from someone suffering the chronic pain I do just hit a nerve. Im 30yr old from Australia, got diagnosed this year (2015) after what I thought was a virus ended me in hospital with septicaemia, since then I have been in hospital with same this 3 more times this year and a kidney stone dropped, I have a left stent in now awaiting surgery to have stone removed, on low dose antibiotics hoping to make it through xmas without a hospital visit, im in pain probably 70% of time if I exercise pain increases, im doing as much research online that I can, think I was hoping for a miracle, like im sure u all are to, good luck to all you fighters, I will defiantly be joining the support group

  11. Nicole says:

    Hello,
    My name is Nicole Thompson. I’m 31 years old single mother of one and just recently got engaged. My fiance and I are almost positive I have MSK. My story starts about 2 years ago, well at least that’s when I found out I had kidney stones. I have had UTI’S and bladder infection and pain my whole life. I also have anxiety so everyone just thought I was over reacting. So I work in a warehouse and I had done some heavy lifting and began to have extreme flank pain and blood in my urine. It scared me because ovarian cancer runs in my family and that was my first fear. I had gone to the ER 3x in extreme pain and they sent me away all 3x saying I was fine after just doing a urine test. Finally I kind of flipped out and said someone needs to do something, run a dang test. They did a CT scan and found 10 stones in my left 2 were over a cm and 7 in my right. They also discovered I have a duplicated ureter on my left side. Now 2 years later. I’ve had 12 surgeries, 8 CT scans, 5 Urologists, and I have a pain management specialist and I’ve probably had around 200 stones removed from my left kindney and 150 from my right. They also dicovered I have a duplicated ureter on my right side too. My very last surgery the Urologist mentioned that my kidneys looked weird. That they were honey combed or spongy. I currently have over 30 stones in the left and not sure how many in my right. But he said it’s impossible to get to them because they are in the meat of the kidney. I too have been told I shouldn’t be in pain, which I am daily. The ER in my town treats me absolutely awful. Sometimes they help me, sometimes they send me home. This has completely changed every part of my life. It’s so hard to work, be a mommy and just function period. I’m at a loss. Every doctor I see helps to a certain point and then hits wall and isn’t sure how to treat my situation. I am actually today passing a stone. Blood in my urine. Extremely sick and in tons of pain. Please tell me what my options are. I live in Ottawa IL, and I’m 31 years old. I am definitely worse then I was 2 years ago and I see no light at the end of the tunnel.

  12. meghan says:

    I was diagnosed with msk about 6 months ago I’ve been dealing with pain and been out of work for a months now my urologist said that I shouldn’t have any pain due to my to kidney stones that are two centimeters a piece of my left kidney I don’t think that he understands the situation that I’m going through…the problem is I’m an EMT and I work on an ambulance and I am NOT allowed to take pain medications while working I change my diet I drink more waterI’m doing everything that’s required to me by both my urologist and my nephrologist and my primary care physician I’m dealing with the pain is best I can …..have any of you gone on disability because of this?

  13. La Velle says:

    Fantastic to see people are learning about the ground breaking research that Prof. Gambaro is currently working on. We are all very excited to know that scientific articles based on the results of that research is on the horizon. Further, it provides hope where previously, there was none. Any symptomatic MSK patients who have struggled with doctors who did not previously have accurate information about MSK, will not only be able to provide their doctors with solid scientifically backed research that supports the patient’s claim of chronic pain and fatigue but those people will also be able to explain that they personally were a subject in that project. Symptomatic MSK patient in the world who suffers chronic pain and or fatigue can participate and we all hope that they all do. People interested in participating will find Prof. Gambaro’s website at http://msknetwork.it

  14. Tasha says:

    Living with MSK is a daily struggle. It is physical, mental and emotional and it feels some days like it would be easier to just give up. Thankfully I belong to an
    Amazing support group full of kind and intelligent people who help understand what bad test results mean and are a source of comfort and laughter to get through tough times,

    I feel hope and gratitude I am accepted to participate in a real study with world renowned doctor. Finally word will get out to the medical world on how to view us as patients Please find the questionnaire and information about the project at: https://www.msknetwork.it/
    For support come join us at Medullary Sponge Kidney Awareness, Support, and research.
    Hugs to you all suffering through this disease

  15. Dr. Giovanni Gambaro at Columbus Hospital in Rome is organizing a study investigating the association between Medullary Sponge Kidney and pain. We would like to broadcast the link for the project’s website, where there is a questionnaire that participants will fill out and which we will use to determine whether they are suitable participants. Anyone with a diagnosis of MSK is welcome and encouraged to participate! We are trying to reach as many MSK patients as we can in order to elucidate this currently inexplicable link between pain and MSK.

    Please find the questionnaire and information about the project at: https://www.msknetwork.it/

    • Kathleen says:

      Thank you Nicole, it is fantastic to see Dr. Gambaro’s study mentioned here. I belong to Medullary Sponge Kidney Awareness, Support and Research, a Facebook support group for MSK patients and their families. We have been encouraging our members to participate in the study also. I hope that more people will take this opportunity to change the way medical professionals view MSK.

    • L. Bousada says:

      I have msk. Currently we are very excited to get behind Dr. Giovanni Gambaro’s latest msk research that he and his associates in Italy are conducting. This is an on line survey for medullary sponge kidney sufferers. You can do this from home and be a part of the most exciting bit of research, that I am aware of since I begin my downward spiral with this disease in 2006. This current ongoing survey happening now, has given sufferers with msk a huge amount of hope for the future. Our hope being, since this survey is exclusively for sufferers that have chronic, daily pain that doctors’, urologists’ and nephrologists will begin to understand that msk is not just a easy little benign disease. It is for those that are symptomatic with metabolic disorders, a difficult painful and debilitating chronic progressive disease. We are behind this survey because it offers us the hope that one day the medical books will more accurately reflect what this disease really is.

      Best regards,

      Laura Bousada

      GAMBARO GIOVANNI, MD, PhD
      Born November 14, 1954

      Associate Professor of Nephrology
      Catholic University, Rome, Italy

      Head of the Division of Nephrology and Dialysis
      Columbus-Gemelli University Hospital, Rome

      1979 Medical School: University of Padova. M.D., max score cum laude
      National Board of Physician Examination 1979
      Residency: 1979-1982 Dept. of Internal Medicine, Padova University and Dept. of Internal Medicine, Military Hospital of Padova.
      Chief Resident: 1983-1985 Dept. of Internal Medicine, Division of Nephrology, University of Padova
      Specialist in Internal Medicine. Specialist in Nephrology
      1993 PhD in Experimental Medicine (Nephrourology)

      1986 Visiting Fellow, Dept. of Physiology, Ludwig Maximillian University of Munich (Germany) supported by Stiftelsen Blanceflor Boncompagni-Ludovisi Food Bildt, Stockolm
      2001, Visiting doctor, Renal Transplant Section, Renal Division, Guy’s Hospital, London, UK.

      Awards
      1983 National Award “Alcmeone” for young nephrologists;
      1999 Arturo Borsatti Nephrological Award

      Invited lectures at Steno Memorial Hospital, Copenhagen; Poland Society of Diabetology, EDTA-ERA; European Urolithiasis Society; Institute of Endocrinology, Russian Accademy of Medical Science, Moscow; Romanian Society of Diabetology, Bucarest; University of Tubingen, Germany; European Community in the Tempus framework, University of Tirana, Albania; International Society of Physiopathology; Institute of Nephrology, University of Caracas; Endocrinological Society of Venezuela; Sociedad Mexicana de Nefrologia; World Cong. on Controversies in Obesity, Hypertension and Diabetes, Berlin; International Urolithiasis Research Symp.,
      Indianapolis, USA; International Society of Nephrology.

      Consultant, Division of Nephrology, University Hospital, Padova, 1992-2003
      Chief of the peritoneal dialysis service of the Division of Nephrology, University Hospital, Padova, 1997-2003
      Associate Professor of Nephrology, University of Verona, 2004-2008
      Associate Professor of Nephrology, Catholic University, Rome, 2009-now
      Head of the Division of Nephrology, Gemelli University Hospital, Rome, 2009-now

      Author of more than. 200 papers published in international journals, among which New Engl J Med, Lancet.

  16. James Garel says:

    I have been suffering since i was twenty, I’m 33 now. 13 years of pain. It wont get better, I’ve accepted this. But the support I’ve found online allows me to cope and tolerate this disease. I’m one of the lucky ones, with a pcp and urologist and nephrologist who understand and believe me and my pain. But we need more. More research, more voices, and more help. We can get there if we all stand up and voice our struggle. Good luck spongies, we can do it

  17. Hollie says:

    I have been suffering with MSK for almost 12 years. I have had it my whole life but 12 years ago was the beginning of my painful journey. I can say I have been to hell but NOW I feel like I have a better grip on what I have to do to live with MSK. With the diet changes and lifestyle changes I have had to make I’m starting to get a taste of living again. I’m humbled by the support I have receive from our private group of “sponges “. You actually begin to think you’re crazy. Who can have so much pain and have someone tell you it shouldn’t hurt? I go crazy when being told this and I’m happy I’m not alone. Thank you Kayla and Mary for writing this and for all you do to get the word out. Not everyone is courageous to make videos and opening yourself up to others not knowing how it will be received. IF YOU HAVE MSK and feel hopeless, KNOW TWO THINGS. 1. YOU ARE NOT ALONE 2. YOU ARE NOT CRAZY. Thank you!

  18. Diane says:

    Thank you for writing this. I’ve been dealing with msk for 16 years now. I just had my 38th surgery in March. I’m pretty much at a dead end. Kidneys aren’t functioning properly and form stones constantly. It’s so nice to know there’s others out there I can “vent” to. Thank you so much for the support, love and friendship.

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