Medullary Sponge Kidney Disease (MSK) Community
Hi, I'm new here...sorry this post is so long
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This patient support community is for discussions relating to Medullary Sponge Kidney Disease (MSK).

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Hi, I'm new here...sorry this post is so long

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  

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168348_tn?1379360675
Ahh this brings everybody up to date .. so glad you had the opportunity to do a post to help others, too!

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)
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168348_tn?1379360675
PS:  They never said anyting bout MSK to my mom but she didn't have an IVP w/xray so we really don't know and she is 82yrs old .. I'm 49.

Cheryl
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408409_tn?1344916781
Cheryl, one of your comments reminded me of another disturbing symptom I've been having for almost 2 years now: intermittent, but drastic, weight loss. In 2006, I (unintentionally) lost 30 pounds in about 4 months due to a high-stress lifestyle, a poor diet (we were in a very bad financial situation at the time), not to mention all the nausea/puking from the stones and ovarian cysts, as well as chronic pain being a natural appetite suppressant. I've never had an eating disorder or even any behaviors/thoughts consistent with one. I went from a healthy 5'2" at 115-120 lb. to just over 86 lb. I was so busy at the time (FT college courses, a toddler, and a husband who was, at the time, somewhat controlling and emotionally abusive. I didn't even realize that I was so thin. I knew I was losing weight, but I didn't feel any worse than usual until I got to about 90 lb. or so. I then started being profoundly fatigued, depressed, my kidneys hurt much worse than usual, and when I found out what my weight was, I started buying Ensure and drinking one a day along with 3 regular meals to try and keep my weight up. I am still struggling with it. Right now, I'm at about 100 lb., and feeling a little better. Has anyone else had sudden, dramatic, unintentional weight loss like this?
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168348_tn?1379360675
Mine was directly related to the infection and short duration.  Ten lbs in two weeks.  I also had 2yrs of ovarian cysts at the same time as MSK dx and stones!!! But no more since then ... there is a brand new community for Ovarian Cysts .. pls. feel free to post there if anybody out there has MSK with ovarian cysts ... even if we pick up one more person it may help you .. I "may" go over actually and post the ? .. nothing lost ...

Here is the link to ov. cysts:

http://www.medhelp.org/forums/show/258


I will generic post it asking about Kidney Disorders such as MSK and ovarian cysts, etc.

STRESS has brought on 3 of my stones passing .. I passed a 4mm one last year 12 days after my thyroid surgery and with ea. mini surgery a few mos later for other skin issues I passed a stone with ea. one about a day or so later ... so stress and pain with MSK go hand in hand along with dehydration such as prep for colonosocpies, etc., etc.

Cheryl
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168348_tn?1379360675
Here is the post on ovarian cysts .. let's see what they have to offer!

http://www.medhelp.org/posts/show/514206


Cheryl
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489228_tn?1291535054
I have known I had the many many stones in both kidneys for about 11 years....,but was not diagnoised with MSk till about 5 years ago.  I have Interstitial Cystitis as well, that is where most of my catheter experiences have come from... About a year ago my bladder shut down almost completely and I have to be on a medication to be able to go to the bathroom.

The following I think is the best article on MSK out there.  I copied just 2 important sections in the article.  I too live with chronic infection that we can not cure!
I am glad you signed on!!  The point is together we can work to make a difference for other MSK patients!

Shelly


http://www.emedicine.com:80/med/topic1413.htm

Patients with MSK and UTI

MSK in these patients must be treated aggressively until the urine is clear.

Proteus infection can lead to formation of struvite stones and requires aggressive antibacterial therapy.


Some physicians may encounter patients with MSK who claim severe, chronic renal pain without any manifestation of infection, stones, or obstruction. The source of this pain is unclear. These patients may be treated best by physicians comfortable with chronic pain management.


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408409_tn?1344916781
My goodness! I had forgotten I had posted this way back in the day! I actually found the answer to this in Dec 2010, when I was visiting Houston and got really sick with the urinary stuff (flank pain, nausea, vomiting, urinary pain, fever), it was a really big, teaching hospital, and so maybe they were looking for interesting zebras or something, but they did an renal/ureteral ultrasound, and you know what? I have vesicoureteral reflux! the urine is apparently going back up into the kidney, which causes me to have UTI's a lot...

I also found out in 2010 that I have Ehlers-Danlos Syndrome, still waiting to be tested to rule out Type IV (because the neurologist saw types III and IV but didn't give a definitive diagnosis) and in 2012, I had an emergency open laparotomy and bowel resection for an ileocecal intussusception.

Yeah, at age 29.

So, yeah, to all the doctors who treated me like crap back in '08, thank you. Thank you for leading me around like a dog on a chain with your lack of knowledge of genetic connective tissue disorders. Thank you for not believing me all those times I came to you to help me get better....I had insurance back then! a simple, genetic test would've saved me a LOT of pain and grief throughout the next 4 years. So yeah, thanks a whole bunch!
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