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Medullary Sponge Kidney Disease (MSK) Community
This patient support community is for discussions relating to Medullary Sponge Kidney Disease (MSK).
Hi, I'm new here...sorry this post is so long
by sociostudent, May 08, 2008 12:21PM
Thank you for the warm welcome into the MSK group. I don't know for sure, but I think I may have MSK. I've had somewhere around 20 kidney stones in the last 10 years (I stopped counting around 20, it was making me too depressed.) I've had so many UTI's that I'm completely resistant to most of the usual antibiotics: Amoxicillin, Bactrim, etc., my infections laugh at them. With my UA's (I have become so familiar with a catheter that I don't even feel it anymore), about 70% of the time, there's at least a small amount of blood in my urine, and proteinuria about 20%. My biological mother has a pretty serious urinary condition (with stones, obstruction, and retention) , and so I think whatever it is, I got it from her. I don't know that much about her, though. What symptoms are common with MSK?
Sent by ChitChatNIne
May 07, 2008 05:03PM
Do me a favor and if you feel comfortable copy and paste your message into a post because MSKShelly has used a catheter and she, too, has serious am't of stones and knows alot more on the technical side of it (hereditary, etc.) ..
I will write more later .. actually popped on before dinner .... I had constant microhematuria and they ruled out cancer twice.
Only an IVP w/contrast Xray will really pick up the MSK .. CT scan can do so but the other is really the best ..
more later,
Cheryl
Sent by sociostudent
May 07, 2008 10:15PM
I haven't had an IVP since 2003, so I'll be sure to ask about it when I get my insurance back in January. I've had plenty of CT scans but they always only find a stone or two, nothing else. I HATE contrast! When I drink it, I feel nauseated, then when they put it in my arm, it hurts really bad. I also am concerned about the amounts of radiation I've received from having over 30 CT scans just in the past couple of years, as well as the contrasts' effects on my kidneys. I had a cysto. in '00 and '02 for obstructions, and a stent was placed during the second one, which resulted in a severe UTI and a 4 day hospitalization (apparently, my ureter did NOT like a foreign object being shoved inside of it, because after they finally got me to a room at the ER and did an x-ray, they found out that the stent was literally trying to “expel” the stent, shredding the lining of my ureter so bad that I was peeing PURPLE CLOTS and rolling around on the bed in agony).
In a way, I've almost gotten used to the pain. I've had urinary discomfort since I was a little girl. I remember when I was 7 or 8 and came up with my own "diagnostic test" for bladder infections, since I had had them for 2 or 3 years, on and off. . I would start peeing and count out loud: "One one-thousand, Two one-thousand..." and if I didn't get to 5, I had another one. I’m sure I sounded hilarious to the other girls in the stalls, but when it hurts when and where you pee, you don’t care what anyone thinks of you ; you just want to get it to stop. I honestly don't remember urinating NOT hurting to some degree.
I'm going to sleep now, but tomorrow I'll post on the forum. Thanks for your advice!
Sheree
Sent by ChitChatNIne
3 hours ago
I'll look for your post (so it helps others, too with my reply) ... I have some thoughts to share on why we get these infections like we do and so often ....... I had 2 cystos and also 2 high level urine tests that were DNA to rule out any cancer (UroVysion tests) .... I agree with the radiation. MAKE SURE YOUR THYROID is covered if they are in that area at all (dentist, too). I have had thy cancer (small tumors) and although no direct radation, that is a direct concern to get thy cancer/nodules from the radation treatments, etc.
You sound so similar to so many of us ....................I'm so glad you will post and that you found us.
Sent by sociostudent
It's almost always been abdominal CT's for the stones and ovarian cysts, but they never shielded me anywhere for any of them. However, I had a routine thyroid panel a little over a year ago, and it was perfect, so I think I'm ok in that dept. It's kidney, bladder, and ovarian problems I'm worried about. My grandmother died of ovarian cancer at the ripe old age of 45, which is not a good omen for me. I’ve been told by my grandparents and my dad that my biological mother had the same problems with chronic UTI’s and kidney stones, but I don’t know much more about her..
BTW, What is ya'll's usual GFR's? I've been keeping track of my labs since 2002, and I've noticed a significant drop in the last 2 years (from over 100 to 69 a few months ago, then back up to almost 80 or so a few weeks ago. It has not gotten above 95 since '06, and I'm wondering if it ever will.
For those of you who have MSK, when did you first notice symptoms, and what were they? How long did it take for a doctor to figure it out? and do ya'll have a lot of pain (flank, lower abdominal, or urinary)?
to anyone who has any info or advice. It is more appreciated than you realize.
Thank you,
Sheree
Sent by ChitChatNIne
May 07, 2008 05:03PM
Do me a favor and if you feel comfortable copy and paste your message into a post because MSKShelly has used a catheter and she, too, has serious am't of stones and knows alot more on the technical side of it (hereditary, etc.) ..
I will write more later .. actually popped on before dinner .... I had constant microhematuria and they ruled out cancer twice.
Only an IVP w/contrast Xray will really pick up the MSK .. CT scan can do so but the other is really the best ..
more later,
Cheryl
Sent by sociostudent
May 07, 2008 10:15PM
I haven't had an IVP since 2003, so I'll be sure to ask about it when I get my insurance back in January. I've had plenty of CT scans but they always only find a stone or two, nothing else. I HATE contrast! When I drink it, I feel nauseated, then when they put it in my arm, it hurts really bad. I also am concerned about the amounts of radiation I've received from having over 30 CT scans just in the past couple of years, as well as the contrasts' effects on my kidneys. I had a cysto. in '00 and '02 for obstructions, and a stent was placed during the second one, which resulted in a severe UTI and a 4 day hospitalization (apparently, my ureter did NOT like a foreign object being shoved inside of it, because after they finally got me to a room at the ER and did an x-ray, they found out that the stent was literally trying to “expel” the stent, shredding the lining of my ureter so bad that I was peeing PURPLE CLOTS and rolling around on the bed in agony).
In a way, I've almost gotten used to the pain. I've had urinary discomfort since I was a little girl. I remember when I was 7 or 8 and came up with my own "diagnostic test" for bladder infections, since I had had them for 2 or 3 years, on and off. . I would start peeing and count out loud: "One one-thousand, Two one-thousand..." and if I didn't get to 5, I had another one. I’m sure I sounded hilarious to the other girls in the stalls, but when it hurts when and where you pee, you don’t care what anyone thinks of you ; you just want to get it to stop. I honestly don't remember urinating NOT hurting to some degree.
I'm going to sleep now, but tomorrow I'll post on the forum. Thanks for your advice!
Sheree
Sent by ChitChatNIne
3 hours ago
I'll look for your post (so it helps others, too with my reply) ... I have some thoughts to share on why we get these infections like we do and so often ....... I had 2 cystos and also 2 high level urine tests that were DNA to rule out any cancer (UroVysion tests) .... I agree with the radiation. MAKE SURE YOUR THYROID is covered if they are in that area at all (dentist, too). I have had thy cancer (small tumors) and although no direct radation, that is a direct concern to get thy cancer/nodules from the radation treatments, etc.
You sound so similar to so many of us ....................I'm so glad you will post and that you found us.
Sent by sociostudent
It's almost always been abdominal CT's for the stones and ovarian cysts, but they never shielded me anywhere for any of them. However, I had a routine thyroid panel a little over a year ago, and it was perfect, so I think I'm ok in that dept. It's kidney, bladder, and ovarian problems I'm worried about. My grandmother died of ovarian cancer at the ripe old age of 45, which is not a good omen for me. I’ve been told by my grandparents and my dad that my biological mother had the same problems with chronic UTI’s and kidney stones, but I don’t know much more about her..
BTW, What is ya'll's usual GFR's? I've been keeping track of my labs since 2002, and I've noticed a significant drop in the last 2 years (from over 100 to 69 a few months ago, then back up to almost 80 or so a few weeks ago. It has not gotten above 95 since '06, and I'm wondering if it ever will.
For those of you who have MSK, when did you first notice symptoms, and what were they? How long did it take for a doctor to figure it out? and do ya'll have a lot of pain (flank, lower abdominal, or urinary)?
to anyone who has any info or advice. It is more appreciated than you realize.
Thank you,
Sheree
I first was diagnosed with MSK because I had a terrible UTI that was negative for 2 weeks but I lost 10lbs and had bad bad symptoms .. finally the uro put me on antibiotic and it did nothing and in 3 days changed it and I began to feel well again!!!!
I was in the ER with a huge raspberry sized and looking clot that I passed and so new to me I got so scared I flushed it away (always catch what you pass for analysis) .... so after having micrhematuria in blood for mos they did an IVP Xray with Contrast in addition to knowing the CT scan revealed stones and they found the MSK without any question and my 2nd opinon agreed with the orig films without a doubt anybody can see the flaring tubules with naked eye no less on the film!!!! I was told they should not be visible at all .. thus my trek on MSK began about 2-3yrs agol
Since then I have passed numerous small stones and gravel and have had about 4 UT infections a year .. finally I learned and only have first morning urine sent to the lab for best chance of finding the infection!!!!
My Dr. mentioned that oftentimes the infection is deep inside an actual porous stone and therefore that is why we get repeat infections!!!!!! So sometimes antibiotic therapy is needed to rid an infection.
I also had cell changes from the stones ... they did two urine high level tests which finally revealed both times inflammatory cell changes NOT concurrent with cancer and from cells changing bcz of the constant movement of the stones in the medullary and that meant pain, too!!!!!!
I hope this helps by sharing my story ...........................my mom, brother, father all have had stones .. my mom's almost killed her and was silent .. hers were uric acid and mine are calcium oxalate .. my brother and dad we don't know or my borther has forgotten.
My Uro has recommended I try magnesium and B6 to help counteract stone production and a product called Beelith .. I cannot tolerate meds with citrate in them bcz of GI upse that is relentless ....
Hope this helps .. I'm sure others can help you some more specific to your condition .. I am lucky .... mine comes and goes and I'm stone free now .. so pain is minimal.
Cheryl (MSK with Stones)
Cheryl