Medullary Sponge Kidney Disease (MSK) Community
Which doc Urologist or Nephrologist?
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Which doc Urologist or Nephrologist?

5847805?1277747618
Can anyone tell me who should be overseeing my treatment/s, I've had repeated stones that I can't pass due to a stricted ureters, since 2006 5 in total both kidneys, but left more frequently, together with lithotripsy 4 treatments which were unsuccessful, and 3 surgeries to remove stones both with laser, and basket, then subsequently stented which I found agonizing to cope with, and I've always considered myself to have a high pain threshold! I was recently told I now have Nephrocalcinosis in my left kidney, I don't have a diagnosis for MSK because I've never been given an IVP! It's only after looking on this site this has been suggested to my. My urologist is quite dismissive of the pain I have saying 'you don't get pain unless you have a migrating stone' am I going crazy I frequently ask myself! Anyway should I be seeing a Nephrologist rather than a Urologist...and my calcium deposits are in the 'meaty' part of my kidney (mu Uro's description, not mine, lol) Can anyone please advise, I also have a history treated by my Nephrologist of Nephrotic Syndrome, I am happy to say I've not had an episode of that since 2006. I would appreciate any advice/information I can get.......Thanks - Jan
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Hi!
wow your story sounds alot like mine... You should probably see both docotrs. I do. The urologist will deal with the stones when they are migrating, causing problems in urinary tract etc...  but usually won't deal with the actual kidney disease part. A nephrologist will deal with the MSK itself, if you truly have it, and will do testing of the kidneys etc.   It does get kind of confusing. My nephrologist won't even give me pain meds if I have a stone passing...I have to see the urol. for that.   However so far I have really had a hard time finding a doctor who has a decent bedside manner and who knows what they are doing!    I wish you luck  I know how hard it is to deal with these things.  Try seeing the urologist and maybe they can refer you to a neph.

Goodluck !! and keep us posted!!

Kim
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1223946_tn?1281395958
Thanks so much kim I already have a nephrologist for another condition (Nephrotic Syndrome) which I've had 3 episodes of, but since 2006 have been ok. So I'll call and make an appt tomorrow, I see you're from Ohio, I now live in the UK but I lived in Summit County, Oh for almost 7yrs!  Small world isn't it!
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489228_tn?1291535054
Sorry I missed your initial post... going through a lot right now.  You are NOT alone,
the constant pain is caused by the calcifications in the meat or collecting ducts of your kidney.  Read through the health pages, they are amazing and old posts.  You will hear your story repeated over and over.  I also have some articles that might help you get your doctor to listen to you as well.

can click on the  link at the top right corner of this page.  I used to have it all saved in a draft file so I could easily
post the links but my computer cleared them., however if you search MSK AND PAIN I am sure the many posts  I have made previously should come up.  Though the cause of the pain can vary, for many of us a low level chronic infection has set up with the stones
in the kidney,

There are several steps we have found helpful toward dealing with the pain issues.  Have they check your Vit D levels? If not request
strongly that they do.  I can personally tell you I have an extreme case and still live on
2 full strength antibiotics which I have had to do now for over 5 years BUT since having Dr. Wolf's procedure and treating my low Vit D, this spring marks 2 years with no IV"s and my pain level is controllable!  There are also some natural ways to treat a possible UTI which can help, if not antibiotics long term also can make a difference to some.

I have a website for IC support called MOARKIC on it there is also a menu item for MSK, that has an article I wrote some time ago on MSK and Biofilms that explains the
infection issues.  If you send me a private message with your e-mail address, I would be glad to send you some direct links and articles you can take to your doctor!  We can not post those openly here!

I look forward to hearing from you!  Hang in there your not alone!
Shelly
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