I Have Medullary Sponge Kidney

A Medullary Sponge Kidney anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Medullary Sponge Kidney. You're not alone. 121 People

    Msk And I

    Hi, I'm happy to have found this web group, i've been white knuckkling it 4 a few years - was involved with an online group a few years back. I really enjoyed that
    MicheleMSKr MicheleMSKr
    51-55, F
    1 Response Apr 16, 2012

    Living With Msk And Working

    I have been living with MSK for the past 3 years. However over the past year I have had 3 episodes of kidney stones and recently just had an operation to remove a stone as I could not pass it. What I'm curious to know is, people with this condition, do you work full time while...
    Robo2011 Robo2011
    26-30
    3 Responses Sep 13, 2011

    Living With Medullary Sponge Kidney

     I was just diagnosed with MSK, however I've been having problems for about 12 years. I lost my right kidney in 2000, from stones and  scar tissue. I pass up to 10 stones a month. I live in pretty much constent pain and nausea. I found that it is very hard to try...
    dloc dloc
    31-35
    8 Responses Aug 2, 2009

    I Am New!! And I Have MSK :(

    Hi Everyone! I am new to this group however I am currently in a MSK group on Facebook that has been very helpful and everyone there is awesome if you want to check it out just search "Medullary Sponge Kidney Online Project" on Facebook. I was diagnosed with MSK about 8 years ago...
    BroookieBroooke BroookieBroooke
    26-30, F
    Aug 4, 2013

    Can Some One Please Answer My Question?

    I found out i had MSK when i was in my early twenties because of constant kidney stones. As i have gotten older i get them a lot more frequent . When i first started going to the specialist he informed me that by time i hit 30 i would have complete kidney failure. I am 33 now and...
    BrandyO BrandyO
    31-35, F
    1 Response May 16, 2012

    1yr Later And Im Still Lost

    i was diagnosed with msk in jan of 2010. the disease was found on an ultrasound when doc was looking for cause of pain in lower abdomen. I was sent to a nephrologist who would never explained the disease to me and had no answers why my left kidney was in pain when the disease is...
    julieann9497 julieann9497
    36-40
    5 Responses Feb 18, 2011

    Constant Pain And No Answer But Msk

    I am 23 and recently told I have MSK.  I have constant pain and no one has told me anything further other than just having MSK.  I have no signs of stones or infection.  The pain has been on going for over 2 weeks and its affecting my work (i am in the military).  For all of...
    thumper3488 thumper3488
    22-25
    2 Responses May 23, 2011

    Now What!!!

    I was informed today that i have MSK by my urologist. I told him so that is why i have been having pain in my right kidney for the last couple of years. His response was ' No MSK doesn't cause any pain, you must have problems with your lower back or spine.'So i am looking...
    bajarose bajarose
    51-55, F
    5 Responses Jan 12, 2010

    I Have Medullary Sponge Kidney

    I was diagnosed with msk a few months ago a year or so after I started getting frequent uti's. A ct scan revealed many stones in both kidneys. I've had 5 lithotrypsy's and still get uti's I'm told from the fragments still in the kidneys.  I also have a pain in my left side...
    kmb409 kmb409
    56-60
    1 Response Sep 17, 2010

    My Journey With Medullary Sponge Kidney

    It all started when I had pre-eclampsia in my first pregnancy at age 19, kidney infections in the 3 consecutive pregnancies, then a more painful couple afterwards. I have had sporadic bouts of urethritis in between and after but not had anything since sometime in 2006. I tend to...
    Cheryl78 Cheryl78
    31-35, F
    2 Responses May 22, 2012

    My Sweet Son

    My 14 year old son was just diagnosed with MSK and we were told he has too many stones in each kidney to count.  I can not find enough info on the web and need someone to turn to.  He recently started urinating blood, having pain in his sides and is extremely tired and...
    jadeuel jadeuel
    36-40
    6 Responses Aug 26, 2009

    I am 23 and just found out I had MSK.

    The hospital stumbled upon it during a CT scan. I have history of kidney stones kidney infection and recurrent UTI's. At first I just kind of brushed it off and didn't accept it I guess I'd say. But now I would say I am a little scared and I hate this word but depressed that I...
    cwall811 cwall811
    22-25, F
    Jul 17, 2015

    my name is LaTonya and I have msk

    Hi I just joined this group, and I have to say that I think it's great that there is a group for people like myself suffering with msk. I am 32 years old, I was diagnosed with msk in 2003. My Symptoms starting showing during my first pregnancy, and from there continued to get...
    LaTonya02 LaTonya02
    31-35, F
    Jul 16, 2013

    Medullary Sponge Kidney, A Terrible Disorder Which Doesn’T Have To End In Tragedy!

    I am the father of a wonderful young man who has recently died. Grief stricken, his mother and I are absolutely committed to bringing increased visibility to this little known, seldom discussed disorder. Luke struggled with MSK for half of his life. His first stone occured...
    MSKDAD MSKDAD
    61-65
    2 Responses Mar 8, 2013

    Living With Medullary Sponge Kidneys

    I was working at a hospital for over 23 years. I sympathize and totally agree with psontgirl! I have been living with this close to 4 years now. I was let go from my job because they felt that I could not perform my duties totally. I do get some understanding from my doctor...
    tsenta tsenta
    46-50
    1 Response Jan 23, 2012

    So Tired Of Being In Pain!

    I was diagnosed with msk about five years ago, and am about to have my sixth surgery to remove stones.  The pain is ridiculous!  My poor family  is suffering due to my pain and inability to function as I used to.  I will go into more detail later; however, I just wanted to...
    sickofpain sickofpain
    36-40
    4 Responses Jan 9, 2011

    We Need Help For My 17 Yr Old With Multiple Kidney Stones

    My daughter started having health issues in Jan of 2011. They found out then she has kidney stones and we have been to multiple drs that have told she has msk, then one other said no and one said she might have it. She usually has a lot of stones in bil kidneys. When we went to...
    Diane9295 Diane9295
    46-50, F
    1 Response Aug 22, 2012

    I Have Msk And I'm Scared, In Pain And Confused!

    I Am in bed with a heating pad on my back with cronic pain in my stomach. Is this what I am going to be faced with all my life?Im 41 and love showing horses and Riding Hicking and swimming, I can't even clean the house now. I have had to give up the foods I love andnow will most...
    diddyc diddyc
    41-45
    7 Responses Feb 23, 2012

    Hiding From This Disease Has Become Impossible

    I am a 36 year old mother of 6. I was diagnosed with MSK 5 years ago. I have a very hard time getting my family to understand how hard it is to live with the almost constant pain and frustration. I am no able to hold down a normal full time job because I never know when I will be...
    katy87777 katy87777
    41-45, F
    3 Responses Jan 24, 2010

    What A Crap Life..

    hi,i have msk,i have been suffering with it now for about 7 years,it got so bad that 4 years ago i had my left kidney removed as it was full of stones,the problem was that my right kidney had not developed to its full size,its about 1/3 of the size it should be.it was not...
    tubbywest65 tubbywest65
    46-50
    1 Response Dec 2, 2012

    Trying To Stay Positive But Not Always Succeeding

    I have been having a difficult time staying positive. I was diagnosed with MSK about 5 years ago, although I have been having difficulties with my urinary tract my entire life with my first kidney infection at the age of 11 months. At first, I was passing stones 6-8 times a year...
    sgriffs sgriffs
    41-45, F
    3 Responses Mar 31, 2011

    I'm 37 years old and I have 3 kids.

    I was just diagnosed with MSK and was told I have 20+ kidney stones in both kidneys. I was totally fine. Had stones starting in my twenties but only passed 1 or 2. Now we are scheduling surgery to clean out my kidneys and start preventive care to keep stones gone. Till then...
    gmage gmage
    36-40, F
    1 Response Jun 17, 2014

    I'M Tired

    Does anyone else get periodic episodes of fatigue? I get this a lot? Anyone have symptoms besides kidney pain?
    bb3711 bb3711
    36-40, F
    Sep 12, 2013

    Msk And Becoming A Mom

    I was diagnosed with MSK 5 years ago and was told there was nothing I could do but just deal with it. I have chronic kidney/bladder infections and always have dull pain on both sides of my back. I haven't passed any huge stones but none the less those crystals still pack a punch...
    emisabelle emisabelle
    26-30, F
    4 Responses May 18, 2012

    So Many Stones I Could Build A House.

      I have been a kidney stone sufferer for over 14 years. In that time, I have had over 8 kidney stone surgeries and have passed or had blasted over 200 kidney stones. I hate to say it, but sometimes I feel like I know more about what is going on than my doctors. For those...
    Castle0823 Castle0823
    41-45, F
    1 Response Aug 6, 2013

    I have suffered with MSK

    for around 10 years (I'm 33). I wanted to share my experiences and struggle to get the help I need. Most people do not understand what a kidney stone is let alone how it exits your body. People do not understand that for me and others that an typical attack can last for days...
    graeme1980 graeme1980
    31-35, M
    Nov 6, 2014

    My Experience

    I have suffered with MSK for approx 10 years,it causes me a lot of problems as it affects both kidneys,and the calculi is built up in the meat of the kidneys,so no treatment is avaliable,only pain relief and a drip until its passed. I pass stones every few months and then suffer...
    cazg cazg
    26-30, F
    5 Responses Apr 2, 2009

    i found out i have MSK around 2012 cause i was

    dealing with chronic pain and UTIs for a few years before that, so they decided to get me an ultrasound to see what the problem was and they found the sponge kidneys and they had no idea what it was nor did they ever see it before. well a little history..... i got pregnant for...
    ninaskad ninaskad
    26-30, F
    Sep 23, 2015

      i have msk and have had my left kidney

    removed due to the amount of stones in it and the pain it caused,my right kidney is quite small[about 1/3 of the size it should be]and also has the desease as well,i am in constant pain and at the moment inject myself with morphine sulphate to deal with the pain.because of what...
    tubbywest65 tubbywest65
    46-50
    Jan 6, 2014

    Alone?

    Well it is so nice to know that I'm not alone. That others out there know what I am going through. I was diagnosed 8 years ago am in pain so often and I feel like no one in my life really understands what I am going through I am only 27 but I feel much older. I am so tired all...
    Ifeltsoalone Ifeltsoalone
    26-30, F
    2 Responses Jul 30, 2013

    I am a 44 yr old male

    who passed my first kidney stone when I was 12 and I was diagnosed with Medullary Sponge Kidney in 2004 when I had to give up my job as an X-Ray Tech because I never knew when I would be able to work. I have the daily pain as most of us do and I have had several surgeries to...
    stoner2 stoner2
    46-50, M
    Sep 23, 2014

    I am 37 and have been diagnosed with MSK

    for 10 years now. I have two fantastic boys ages 16 and 17 and a very loving husband who is always ready to go to take over when I am sick. I feel so bad for them when mom is sick again had is back in the hospital but they are so supportive. I have had more stone removal...
    stonergirlstwins stonergirlstwins
    36-40, F
    Aug 11, 2014

    Emergency Room Again...

    I had to go to the emergency room again tonight as I was having trouble breathing...I was diagnosed with pleurisy, which is the swelling of the lining of your lung.  It causes severe chest pain. Apperently it is caused by an underline infection or disease...Has anyone with...
    dereksgirl dereksgirl
    26-30, F
    May 20, 2010

    Msk At Age 13

    Hi I have had msk since I was 13 and I am now 47 at the end of this month. And surprise surprise I'm lying on my hospital bed hoping I can go home tomorrow . Felling so alone not knowing anyone else with this disease. My father and 2 brothers are stone makers but do not have msk...
    Megn Megn
    46-50, F
    1 Response Aug 6, 2013

    Has Anyone Every Gone To The Mayo Clinic For MSK?

    I found out 14 years ago that both of my kidneys were Medullary Sponge Kidneys. I have had multiple lithrotripsies. I have a very similiar story to many of you. About the exact same time I found out that I had MSG my blood pressure was so high several times that I was in the...
    gopokes gopokes
    41-45, F
    1 Response Jan 22, 2013

    Hello my fellow MSK sufferers.

    I have a question for everyone. I was diagnosed with MSK at 9 years old. I am 34 now and as you all know it is a daily struggle. I am applying for disability benefits as it has been impossible to maintain a job with all of the surgeries and hospitalizations. Has anyone else here...
    BrooklynMSK BrooklynMSK
    36-40, F
    1 Response May 22, 2014

    How I Manage Medullary Sponge Kidney And Prevent Stones

    My name is Mark, and I have Medullary Sponge Kidney (MSK). Sounds like an AA meeting, right? Well, it's true (the MSK part, not the AA part). This is the story of how I discovered I had MSK and kidney stones, and how I have discovered how to prevent kidney stones and the...
    HSMark HSMark
    46-50, M
    6 Responses Jun 24, 2013

    Tired Of Msk

    I was diagonsed with msk 8yrs ago. When i went to my first kidney specialest apt the dr said my stones were any where inbetwen 2mm to 1.4cm and that i prob have had msk since i was a young child. Which was funny cuz i was in and out of dr apt and er visits for flank and back pain...
    river29 river29
    26-30, F
    1 Response Jan 26, 2013

    I Might Have MSK (Dr Is Pretty Sure Thats Wht I Have)

    Hi my name is stacey and im 26 yrs old. I have struggled with kidney and bladder infections for the last 8 yrs and recently about a month and a half ago went into the ER with excruciating kidney pain and found out i had a 13by9 mm stone lodged in my right tube they also found i...
    Stacey1986 Stacey1986
    26-30
    2 Responses Mar 14, 2013

    My Stupid Kidneys

    I had my first kidney stone at age 35. At that time I didn't know I  had the disease. At age 42. I had a stone so large it put me in the hospital with blood poisoning.After a stent, and a lithotripsy (which killed 25% of my right kidney, I am surviving. I also have...
    trishhebel trishhebel
    41-45, F
    4 Responses Aug 30, 2009

    I Have Medullary Sponge Kidney

    I know it causes urinary tract infections and kidney stones, and so far I have had just urinary tract infections, and I think I prefer those to kidney stones, also. I read about the kidneys getting full of stones.  That seems very serious.  Of course there's severe pain from...
    MDenise MDenise
    31-35, F
    2 Responses Apr 17, 2013

    21

    My name is Lori. Like every child I loved riding my bike, running around, and making mischief. Unfortunately my childhood was cut short due to problems at home and health issues that started with PMDD at twelve, Asthma at thirteen, and Ovarian cysts at fourteen. After having...
    Loreo8 Loreo8
    22-25, F
    1 Response Mar 21, 2013

    TMI.... Or not enough?

    A week ago I had no idea what renal colic was. I knew it was bad and not something I wanted. A week ago a baby was still not entirely out of the question. A week ago I was just another pill seeking hypochondriac, at least to most of the ER Drs in the area. I can remember a...
    owchimama owchimama
    31-35, F
    2 Responses Mar 25, 2014

    I was in 8th grade the first time

    that I woke up with this terrible flank pain and I couldn't figure out what the heck was wrong with me. My mother took me to the ER and they told me I had kidney stones. They couldn't believe how young I was with this problem. Since then I have had so many I have lost count. I...
    lovinlife0815 lovinlife0815
    26-30, F
    Mar 13

    Biospy Of The Kidney For A Diagnosis Of MSK

    I have had kidney stones since I was 18, now in my fifties I have them on a daily basis. I have gone to three different specialist to fine out why. One dr. at a famous school of medicine told me it was imposible for me to make as many stones as I said I was passing. Even though I...
    JoyceinNC JoyceinNC
    56-60
    2 Responses Nov 2, 2013

    Msk Sucks!!!!!!!!!

    I was diagnosed at age 16 but didn't experience symptoms other then frequent UTI's until I started having children...now I am in constant pain, tired all the time and it seems like I am not getting any help.  I go to the nephrologist today to find out the results of the...
    dereksgirl dereksgirl
    26-30, F
    2 Responses Apr 21, 2010

    Medulery Sponge Kidney

    i first found out i had msk about 10year ago,iwas refered by my doctor to urologist,i had all the tests done and they found my left kidney split open,and kidney stones lodged in them,prior to this my kideys were in sever pain.anyway urologist told me he wanted to do,keyhole...
    dannyboyslmn dannyboyslmn
    41-45
    5 Responses Apr 22, 2010
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