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Medullary Sponge Kidney Disease (MSK) Community
515 Members
Avatar universal

Newly Diagnosed

Hi everyone,

I am SO glad to have found this community, I was diagnosed with MSK a week ago and even as I was researching it online, I was finding very little info.  I feel much better knowing there are other people with it, and who have dealt with it longer than I have and can maybe lend some advice.

My diagnosis has been a while coming.  I started getting flank pain over two months ago which got progressively worse and worse until I left work one day in tears of pain and my mom had to come pick me up and drive me to my doctor's.  They thought it was a kidney infection at first, there was blood in my urine, so they  gave me antibiotics and Vicodin and scheduled an ultrasound.  The ultrasound didn't show anything, so stones, and the antibiotics didn't seem to do anything either.  After a while, the intense pain died down a little, but it would always come back a few days a week.  My doctor sent me to a urologist who sent me for a CT scan, and at that point he determined that I had MSK from the way my kidney took up the dye.  He sent my results to my GP who agreed with the diagnosis.  I'm supposed to see a nephrologist soon to confirm everything, but I'm having trouble getting an appointment so I haven't been in yet.

Everything I've read about MSK seems to fit, especially the unexplained flank and back pain.  I now have Tramadol for the intense pain and it seems to help, although it doesn't make it go away completely.  I've noticed some other things about it, that the pain is very aggravated by activity (I've gained five pounds since I've barely been able to work out the last two months) and stress seems to also trigger it.  I often get nauseous along with the pain, and I loose my appetite for days at a time.  The other thing I've noticed is that it seems like I often get diarrhea with most outbursts of pain, for days at a time, has anyone else noticed this?

I'd really love to hear from those of you who have found some ways to cope with this.  From what I understand there isn't really any "cure," you simply manage it as best you can.  I've heard that sometimes long term antibiotics can help, and if the nephrologist suggests it I'll try it, but I'm nervous about that since I'm somewhat prone to yeast infections anyway.  Has anyone tried any alternative healing methods?  Acupuncture, homeopathics, herbs, etc?  Any luck with those?

I really just want to feel normal again.  I feel like I'm missing out on so much of my life right now.  I'm in pain most of the time while I'm at work since I can't take anything stronger than Tylenol while I'm there (which does nothing for the pain) and I frequently end up in a drugged haze on my time off... Vicoden and Tramadol both knock me out pretty hard.  I want to be able to just go about my normal life, do my job well, enjoy my time off, be able to work out again....  I'd love to hear any suggestions you guys have for me.  Thanks so much!

Sarah
5 Responses
489228 tn?1291535054
Curr Top Microbiol Immunol. 2008;322:163-92. Links
Role of bacterial biofilms in urinary tract infections.
Hatt JK, Rather PN.
Research Service, Veterans Affairs Medical Center, Emory University School of Medicine, Atlanta, GA, USA.

Bacterial urinary tract infections represent the most common type of nosocomial infection. In many cases, the ability of bacteria to both establish and maintain these infections is directly related to biofilm formation on indwelling devices or within the urinary tract itself. This chapter will focus on the role of biofilm formation in urinary tract infections with an emphasis on Gram-negative bacteria. The clinical implications of biofilm formation will be presented along with potential strategies for prevention. In addition, the role of specific pathogen-encoded functions in biofilm development will be discussed.

PMID: 18453276 [PubMed - indexed for MEDLINE]


489228 tn?1291535054
Whoops posted these backwards but you get the idea:)!
I can totally relate to what you are going through..., Welcome to the board!
I am very hopeful that there maybe some treatments.  I am currently scheduled for a ureteroscopic laser to clean out all the calcificatioins within the medulla of the kidney.
Unitl now I have been told they are unreachable!  The reason this is exciting is that unless you can clean out those stones, there is no way to totally get rid of the infection.
For me this has come to the point I require IV"s!

I have used naturals for many years before.... they just no longer work, I have had success with using garlic oil, oregano, and most recently I had a whole year off antibiotics with a product called Silverbioitics by Maerican Biotech labs!  This is a silver that is ionized, IT IS NOT COLLIDAL SILVER AND IS MUCH SAFER!.... Other MSKer have found this to really help their symptoms as well.  I would highly recommend trying it!
For pain I have found a natural called Nerveblend by Solaray is very helpful too.

I have posted reseach on here i other posts that might be helpful to you... however last night I stumbled onto tow new articles that just came out that agan confirm the theory that my doctor and I have that a Biofilm infection actually sets up with in the stones.
I do not have to to repost all I already have to plese read through those on here. But I will post the abstracts I found below!

Hope that helps, we will be leaving tomorrow night for this surgery.  I will post again as soon as I am able but it is a long drive and they are doing both kidneys, so I am very likely to be off the board for a week at least!

Shelly



Expert Opin Biol Ther. 2008 Aug;8(8):1159-66. language=JavaScript1.2> Links
Biofilms in nephrology.
Marcus RJ, Post JC, Stoodley P, Hall-Stoodley L, McGill RL, Sureshkumar KK, Gahlot V.
Division of Nephrology & Hypertension, Allegheny General Hospital, Pittsburgh, PA 15212, USA. ***@****

BACKGROUND: Biofilms are bacterial communities ubiquitous to moist environments. Biofilm formation is a factor in the development and persistence of infectious diseases. In clinical nephrology, biofilms influence the development of kidney stones and affect dialysis systems, including peritoneal and central venous catheters. Biofilms also play critical roles in persistent and resistant renal and urinary tract infections. OBJECTIVE: To describe the physiology of biofilms and potential effects of biofilms upon infectious diseases, focusing on the role of biofilms in kidney stones, indwelling catheters and dialysis equipment. METHODS: A literature search with Medline to identify pertinent English language articles published up to early 2008 using the keywords biofilm, nephrology, renal, calculi and infection. RESULTS/CONCLUSION: Biofilms are ubiquitous in clinical nephrology and play a role in the pathogenesis of resistant infections. Strategies for reducing the effects of biofilms in nephrology are described.

Avatar universal
Hi Shelly, I am new to this site.  I had a friend tell me to search the internet regarding my mskd. I was diagnosed in the year 2000. My whole right kidney was full I couldn't make anymore stones in my right kidney, I have the disease in both kidneys.  My urologist dropped me in a tank full of water and blasted my kidney.  When I woke up out of  surgery I went to my  parents house to stay there, they took care of me.  For 12 straight days I past kidney stones mainly at night. It was such a traumatic experience I  could not hardly sleep. I past 1/2 a jar of stones.  After the surgery he said they were imbedded in the meat of the kidney.  It has been 8 yrs and I am tired I want to feel normal too.  I can relate to you.  I have less than half of the stones now instead of my whole kidney being full. I have had alot of litho treatment to make the stones smaller but I don't want to pass them anymore.  I don't want to be on pain meds anymore I want to stay happy. I am now working 2 jobs I have to work.  I can't afford to miss work.   I have been on a good diet to prevent me from making more stones, but now my urologist says I am still making the stones. What I don't understand still is that the urologist says my calcium levels are high and that they are monitoring me, but he doesn't tell me what I need to do to fix it.  I don't eat food high in calcium. He can't do anything more for me.  He says I have to learn to deal with the disease and look at it as getting rid of one more stone.  Do you know of a Dr. that has more knowledge of this disease?  You mentioned a nephrologist. My urologist never mentioned one. Is this the same as a urologist?  I hope I don't sound stupid.  I just need some education Please let me know if you have any info.  Thank you

Terry
168348 tn?1379360675
COMMUNITY LEADER
Have they checked your parathyroid gland to see why?  Also, a complete thyroid panel?  I'd probably see an Endocrinologist given the severity of your MSK and the calcium issues .. endo's deal with the thyroid and parathyroid and pituitary glands.

A nephrologist studies kidney disease.  A Uro is good, too .. you need to find the best doc to really treat you and listen and be by your side with the MSK as severe as you have it.

If you live on the East Coast my Uro out of NYC (a prestigious hosp) is excellent and is the head of its stone center.

C~
489228 tn?1291535054
HI all I am just back from having a new surgery for MSK and chronic pain.   I am now 98% stone free and I have had no stent and very little pain or passing of stone fragments!  This is procedure is done by Dr. Wolf at the university of Michigan, it is called laser lithotripicy of papilary calcifications.  Using a holmium laser they put a small hole over each of my collecting ducts.  They blasted 9 out of 9 stone pockets in the right kidney and 9 out of 11 in the left, the 2 they left very mild and more risk to go after then to leave!  They also blasted my 2 largers stones in my left kidney.  I had NO STENT!  He said he ususally only does one kidney at a time, however we had no insurance so he did both.  He also warned us they usually when doing both he uses a stent however he was able to avoid if becuase there was not much bleeding.
I have had little to no pain on the left and the right only more instense then before surgery for the first day or two!.., Now my URO and I plan to really hit my chronic infection issues because the research shows that you can treat the infection untill the stones are gone!!!  Dr. Wolf did tell me he did this procedure twice before for the chronic infection without success so we know that the chronic infection also must be treated.  The surgery alone is not enough!  But I am 98% stone free... they left nothing larger then dust to pass, it has been amazing.  I have been told for years that there were no answers!  I am not thinking about getting my life back biking, kyacking etc.  instead of just surviving.  It has been less then a week after surgery and at this point I am still taking it careful, I do still have right kidney pain but a little less the before surgery and we know it takes time to heal!.., I will keep you all posted
on my progress but I we have been very impressed with the staff at Michigan Univeristy and I can not tell you how thankful I am to have found a doctor that believes in us and is helping many MSKers.  While there I learned he is also helping many with polycystic kidney disease too!  Please excuse my spelling it is 4 am got up to take my natural probioitcs and check on here... just wanted to give you all a quick update and assure there is hope!!

Shelly
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