Medullary Sponge Kidney Disease (MSK) Community
multiple stones in both kidneys
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multiple stones in both kidneys

Hi everyone-  I was diagnosed years ago with MSK.  I have passed a few stones, had a couple of kidney infections, UTIs, etc over the years. Several years back, I had a stone stuck in my ureter.  I had it removed.  The whole procedure was a disaster.  I ended up in the hospital with an infection and my original surgeon's partner had to repeat the procedure.  I sustained nerve damage in the process to my bladder.  At the time I was told I had multiple stones, some quite large, in both kidneys.  Nothing was ever done with the stones.  Needless to say, I was not going back to this original doctor and was afraid to let anyone touch me.  So, I still have all of the stones.  Fast forward to now.  I am not feeling well.  This could be caused by many things.  I have been very weak, had very stiff muscles, joint pain, foot swelling, neuropathy, frequent urination, getting up multiple times at night to pee, fatigue, among other symptoms.  In October, I had a physical and my BUN level was high, my creatinine was at the top of what was normal.  My chloride was high.  I asked about this (my primary's office), and the nurse told me it was probably b/c I was dehydrated.  I mentioned I have a history of kidney issues and that was dismissed.  I have been having some pain off and on under my ribcage and in my back, but nothing excruciating.  My questions are: for those of you with multiple stones in your kidneys, were they normally removed or were they left alone?  mine are calcium oxolate stones.  Also, do you think I should make an appointment with a nephrologist? I have no idea what is causing my problems, obviously, but am concerned about the kidney issue.  OH, and I have been taking topamax for migranes (migraines), which I just found out I should have never, ever been prescribed, as it causes kidney stones.  Anyone with kidney problems should never take the drug.  So, now I am weaning off of that as well.  Thanks for any thoughts.  
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489228_tn?1291535054
Sorry it took me so long to answer.  Many of us have very similiar issue. The stones harbor a low level bacteria called biofilms that make us sick, sadly few doctors are taught about this. if you want send me a pm with your e-mail address I will send you some articles on the MSK pain and symptoms etc. I would encourage you to also read throught he healthpages and other posts here too!

Shelly
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1618428_tn?1298768211
Hi: I' have MSK and have been dealing with the disease for the greater part of my life. I was just reading your reply to someone about having some articles on MSK pain and symtoms (symptoms) and I would be interested in reading them too, would you mind sending them to me as well. I have never met any one else with MSK or had the opportunity to discuss any treatments, complications, symtoms (symptoms) etc and would really welcome the chance to.

Karen
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Avatar_n_tn
Hi!  I also have had MSK for years and would appreciate any & all info you might have to share.  Anything I find out, I will be happy to pass along as well.  Have had extensive bilateral stones, had surgery, had immediate hospitalization due to infection, before surgery passed & caught 22 stones, since surgery passed several but not caught, now had CAT that shows extensive bilateral stones again.  Also had continued health problems/issues/symptoms.  
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Avatar_m_tn
Hi Shelly, I was diagnosed in 2006 with MSK - after having 11 years of frequent UTI's, 2 hospitalizations for kidney infections. I currently have 4 stones, although small - the chronic pain is unbearable. My physician tells me I should not have pain. I feel crazy, because I do. Please send me any evidence based research you have and how I can privately get you my email address- as I have reached my wits end! Thank you, MSK in Michigan
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Avatar_f_tn
Im71 with 50 years of stones .multiple laser lithotripsy  surgeries. Passed as many as 9 at one time. Having surgery 1/21/12  fr stones stuck on both sides.
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