Anyone here have Medullary Sponge Kidney Disease?


pinkbutterflykiss
on Feb 08, 2016 @ 01:48 pm

Just wondering if anyone on here has MSK. If so, where do you live, what's your age and have you found anything that helps cut down on the amount of stones you get?
I'm in Ontario Canada, I'm 41 and very few doctors seem to know what MSK is. My specialist says he's never known anyone to produce stones the way I do. We've tried pretty much everything plus I never actually pass the stones myself....they have to go in after them :/
 


7 Replies


wonderwhatif
. on Feb 08, 2016 @ 04:30 pm

Sorry! Never heard of it. Sending you healthy thoughts, having chronic illnesses is sucky.
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pinkbutterflykiss
thank you on Feb 12, 2016 @ 12:56 am

Thank you for your reply. Many people haven't heard of it as its a very rare kidney disease. Sadly many doctors haven't heard of it unless they are urologists and if they've heard about it, they don't know how to treat it :(
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fly_eyez
Sending healthy thoughts on Feb 12, 2016 @ 01:33 am

I also have a chronic illness. I haven't heard of yours before. I have no advice to offer unless you are able to get a second (or more) opinion. Is it possible for you to see another urologist, either in your province / territory or a neighboring one? I've seen two specialists for my condition plus I have two other appts, one in march and one in April. I am hoping one of those surgeons has is able to help me. I have been suffering for over two years, off work since August of 2014, and so many tests but still no surgery yet.
I work in health care and if you're not already aware you can go to the website for the college of physicians and surgeons of Canada and search for urologists (make sure they are taking new pts). You might get lucky with someone who is more knowledgeable about your specific condition and how to treat it. Also, if you go to the ratemd website you might be able to find someone who has the condition and see which doctor they have seen and the patient's experience / results. Don't give up! It's awful to feel hopeless and helpless when you suffer from a rare and / or chronic condition. I hope for the very best for you. Oh, you can also do a random Internet search for people who have this condition. Make sure it's a reputable website. Maybe even a support group.
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prettyrainbow
. on Feb 12, 2016 @ 02:12 am

I really hope you find the treatment you're looking for. I know what it's like to suffer from a chronic illness and not have the doctors understand what it is. Don't give up! Research patient forums online and read up on other people's experiences. That's how I was able to figure out what I had. They could lead you to finding the answers you may be looking for. I also suggest keeping a journal of everything you eat, maybe even try an elimination diet for a few weeks to see if certain foods are making your condition worse. For instance, I've read that kale and other leafy greens can cause kidney stones if eaten regularly. I kept track of my diet this way and found out that acidic foods trigger a reaction, so I eat them in moderation now. I hope it all works out for you. All the best!
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pinkbutterflykiss
. on Feb 12, 2016 @ 05:51 am

I guess I should mention that I've seen all the specialist there is in Ontario that know about MSK. The reason for producing stones is because of what my kidneys are shaped like. I do have a support group online but they all live in the States, so I was hoping to find someone that lived closer to me that would understand what I was going through first hand.
I just had a CT Scan on Sunday and I currently have 8 large stones that need to come out. If any of you have had stones before you know how painful they are. I've had 3 babies and I'd rather go through labour and birth than to experience a stone....and to think I have 8 of them all at once. :/
I've tried all the food diary's etc and my kidney specialist does specialized urine tests every 3-4 months on me and will try different things but nothings seems to work.
I also have MS on top of all of this and I'm a single mom of 3 kids. I'm thankful that my kids are pretty understanding and usually pretty helpful but I hate that they worry about me so much. My youngest just turned 16 and my oldest is 21. My 17 year old is Autistic. They are older now and more self sufficient but keep in mind that I've been sick for 13 years now :(
I try to remain optimistic and positive but some days it's really difficult
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Anonymous
anyone here? on Feb 12, 2016 @ 07:10 am

All i know is that your problem also known as cacchi-ricci is a congenital disease. You didn't say if you get any uti's urinary tract infections as you would most likely be prone to these. I have never heard of stones not passing, sorry you're going through this.And 8, that's terrible to imagine.Please, do remain optimistic in future endeavours with your physician. Have you also requested a second opinion from another doctor? Again, good luck to you.
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Sanmac
Yes, yes, and yes!!! on Aug 10, 2016 @ 07:33 pm

I also live in Ontario and I'm 43, I was diagnosed in 2002 with MSK. I produce stones at a very high rate and have had lithotripsy, and shock wave therapy in the past. I produce calcium oxalate stones. It is frustrating because I have a hard time getting pain killers when I m trying to pass stones, which I have passed many. Not sure why, I suffer so much and it isn't fair that I have to go into emergency every time to get pain meds. I feel for you!! And I'm glad I can connect with someone who shares my pain. Not much can be done outside of a low oxalate diet and a pill called indapamide to help reduce the production. Hope to hear from you!!
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