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Medullary Sponge Kidney Disease (MSK) Community
515 Members
529457 tn?1212841532

Newly diagnosed, full of questions

Hello there all I'm happy to have found you. I found out I had MSK after collapsing at work and two weeks of tests, scans and drinking awful solutions. Once I was finally okayed to go to the uruologist he had a diagnosis in fifteen minutes. But not a lot to go on from there. He said that MSK was still relitively new with a lot of unknowns that we'd just have to regularly monitor. Drink a lot of water, don't eat nuts or chocolate, eat more citrus, here's some pain pills: see you next month. Now I'm sitting here trying to figure out what to do. I haven't found very many useful sites at all online (though that may be completely due to being very frustrated). I'm afraid of taking the pain pills prescribed because of their side effects warning (Toradol) which warn about severe allergic reactions. Does anyone else take Toradol? Is there a diet that helps ease some of the strain on the kidneys? Can I continue weight lifting safely? I have so many questions.

Kitty
6 Responses
489228 tn?1291535054
I know it is overwhelming when you get a new diagnosis.  It sounds like you have a good doctor, just the fact that he acknowledges that MSK can cause pain is really HUGE and more then most!  As far as diet many have found that eating meat increase the pain etc. so limit it to about 6oz a day getting your protein from other sources.  I have to leave for church so will post some links of info.etc.  and then more later:

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


http://www.emedicine.com/radio/topic433.htm


I just recently found this article which is amazing but at this point maybe a little confusing to you, however I would encouarage you to save it and give it to your doctor!



Ureteroscopic laser papillotomy to treat papillary calcifications associated with chronic flank pain
Urology - Volume 67, Issue 4 (April 2006) - Copyright © 2006 Elsevier - About This Journal

Adult urology

Ureteroscopic laser papillotomy to treat papillary calcifications associated with chronic flank pain


David A. Taub

Ronald S. Suh

Gary J. Faerber

J. Stuart Wolf, Jr ⁎



Department of Urology, University of Michigan, Ann Arbor, Michigan

* Reprint requests: J. Stuart Wolf, Jr., M.D., Department of Urology, University of Michigan, 1500 East Medical Center Drive, 3875 TC, Ann Arbor, MI 48109-0330.

E-mail address: ***@****

Manuscript received February 27, 2005 , accepted October 24, 2005



PII S0090-4295(05)01546-3



Abstract Objectives
To evaluate retrospectively the efficacy and durability of a novel approach using ureteroscopic laser papillotomy for the treatment of painful papillary calcifications. Chronic pain due to renal papillary calcifications has not been addressed by current techniques.
Methods
Ureteroscopic holmium laser lithotripsy and papillotomy were performed on patients with chronic pain and radiographically visible papillary calcifications without free collecting system calculi. The papillary urothelium overlying all cystic dilations and intraductal calcifications was vaporized. Treated patients answered a telephone survey to assess pain scores, duration of response, use of narcotics, and patient satisfaction. We reviewed the medical records to evaluate for procedure-related complications and serum creatinine measurements.
Results
Of 20 patients who underwent laser papillotomy and responded to the telephone survey, 7 had bilateral procedures, yielding 27 renal units available for analysis. “Much less pain” was reported after 85% of the procedures, with a durable improvement reported after 59% of the procedures, at a median follow-up of 14.5 months. Significant improvements in the median pain scores were seen at 1 month (1.0, P <0.001), 6 months (2.0, P <0.001), and 1 year (1.5, P <0.001) compared with a median preoperative pain score of 9.0. The mean serum creatinine was unchanged after the procedure.
Conclusions
Ureteroscopic laser papillotomy appears to be an effective treatment option for the chronic pain associated with papillary calcifications. Laser papillotomy offers hope to patients who would otherwise have been denied an attempt at treatment because of a lack of free calculi within the collecting system.



489228 tn?1291535054
Has your doctor done a 24hour urine? Many of us have metabolic issues that also increase our stones.  If so did the doctor give you the results?

I hope the above articles and info helpedou out!
Shelly
168348 tn?1379360675
COMMUNITY LEADER
hello and WELCOME to the community!

I have MSK, too, and produce stones ... the citrus fruits help with the acid!  The e-medicine article is one of the best to begin to understand MSK and what it is all about .. I am so sorry you are going through this BUT you ARE IN THE RIGHT place because you are right .. there are not many online areas for support and that is why MedHelp has this MSK  Community .. to help others like us!

Do you have kidney stones?

I have not used Toradel myself .... I've been lucky and Mobic has helped and/or watching what I eat .. I cannot drink fruit juices .. make my kidney ping and pang!

Defintely do a 24hr study as Shelly suggests and bookmark her other articles ... they are great resources.

MSK comes and goes in the pain dept .. oftentimes many have reported a flare with emotional stress!

Any questions .. just let us know .. we are here for you and WELCOME to the community.

Oh .. one more ? .. what kind of Dr. are you seeing for the MSK?

Cheryl (msk with calcium oxalate stones)
529457 tn?1212841532
> Has your doctor done a 24hour urine? Many of us have metabolic issues that also increase our stones.  If so did the doctor give you the results?

No we haven't done a 24 hour urine yet. I'm trying to get him to do more digging than just diagnosing and giving pain pills. He doesn't want to do more than just watch and see how it goes.

> Do you have kidney stones?

Yes. We actually only found out while I was passing one at work which made for a really interesting rush at the bar I work at. I thought I was having a cyst pop and the pain would pass so I tried to soldier it out. It just got worse and my coworkers took over getting me to the ER.

> I have not used Toradel myself .... I've been lucky and Mobic has helped and/or watching what I eat .. I cannot drink fruit juices .. make my kidney ping and pang!

I drink a lot of juices and eat a lot of fruits to handle to handle other health problems like arthritis and low blood sugar. Looking through the different diets for renal health I'm really worried about cutting down protein between my low blood sugar and what I'm used to having to maintain muscle strength after weight training. What else is good to eat for protein other than meats and nuts?

> Any questions .. just let us know .. we are here for you and WELCOME to the community.

Thank you so much for making me feel welcome. I appreciate it guys.

> Oh .. one more ? .. what kind of Dr. are you seeing for the MSK?

A urologist. I had a consult with a nephrologist but I honestly didn’t jive with the guy's bearing. He wouldn’t shake a hand or smile or even try to be sociable. I never made a second appointment with him and saw the urologist instead.

Kitty
168348 tn?1379360675
COMMUNITY LEADER
They took so many vials of blood to run every metabollic test known to man on my first visit to my competent Urologist.  I fired the first one .. he was good, but was not good enough .... you need somebody with knowledge .. not just a pain pill pusher .... yes, I agree with you 100% on that premise.

A 24hr urine is essential!!!!  That is my strong opinion with any stone former, let alone the MSK!!!!

I have kidney panel done ev. 6 mos for the Mobic (I have arthritis in one ankle pretty bad) to make sure I'm ok with the anti inflammatory.  Actually, many MSK patients have found that the use of NSAID's and/or antibiotics makes us pass stones more readily ... it was after I was on the NSAID for long term usage that all my stones are now gone .. that, along with numerous antibiotics used for UTI's that were pretty significant .. some test + and others test - but go by symptoms ....

Just something I wanted to pass along to you; feelings of some other MSK patients (not necessarily doctors .. it's tough to find those with knowledge and more than a handful of patients they treat with this condition).

C~
489228 tn?1291535054
YOu might consider looking around for a doctor more familiar with MSK.  You really need a 24 hour urine.  Where do you live?  (I am asking to see if I can find or know of a good doctor)>

There are a lot of things you can eat beside meat for protein.  I have low blood sugar too, and do not cut out but limit meat.  Penaut butter, nuts, cheese, milk products and whole grains all have protein and are good for low blood sugar!

It is good to have you on the board!  I do hope that you can find a doctor more helpful!
Shelly
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