Medullary Sponge Kidney Disease (MSK) Community
sponge kidney disease
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This patient support community is for discussions relating to Medullary Sponge Kidney Disease (MSK).

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sponge kidney disease

Hi everyone!
Yes, I am one of you. I am 42 and have been living with this disease since I was 25. I have done many different types of treatments, lithotripsy, laser, pain therapy (nerve blocks) and many pain meds, not to mention many different diets. I am going for surgery approx. 2 times a year (use to be every 6-8 months), laser works best for me and am under constant care from my urologist and a naphrologist. What really perplexes me is how many other people suffer from this disease, yet not many doctors or specialists are studying it. I just recently found out that my brother has been diagnosed with this disease and am now having my 2 sons tested. All I have been told is that it is now known to be hereditary and that it can show at any time in your life. What I would like to know is there a doctor out there that is specifically studying this disease and where do I sign up??? I suffer on a daily basis with pain (I also have fibromyalgia which worsens the pain) and would like to live a life with some sort of good quality. Any suggestions would help greatly. Thanks and good luck to everyone else who suffers!!!!
8 Comments Post a Comment
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4358712_tn?1353348292
Hi! (love your nickname btw!!!...too funny!!) I'm 41 yrs old and have been going through the exact same thing since I was 21!welcome to my world!! ;) I just had 2 stents put in on Thursday...pains not terrrribleee, but not so comfy cozy either. It *****!! But I'll survive, I suppose. Not to be nosy and I don't need your "exact" location, but where are you from? I'm from Canada...not far from Niagara falls Ontario. it would be helpful if I could find someone who specializes in this field!! My urologist is good but, like you, a specialist would be helpful. Ever had 2 stents put in before?? This is the first I've hrard of it. Owwwwiiieee. like I said it *****!
Hope to hear from you soon! Cat.. :)
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Avatar_f_tn
Hi Cat!
Thanks for the response. Sorry to hear that you're going through this too. I live in Kitchener, but my specialists are in Guelph. It took me 6 urologists to get one who had any idea what to do with me!! lol I have never had two stents before and seriously do not do well with one!!! I only last about 2 days before they have to remove it! I have a terrible reaction to the materials used in the stents....tried many different types. I usually end up having laser surgery to get rid of the stones and a stent and catheter is put in place and removed in two days....other than this it is morphine and toradol...the only mixture that seems to work for me. I am not a whiner but gosh I would rather give birth than go through this process over and over. What I can't understand is why with so many people with this disease that more studies are not being done. It frustrates me to no end when I speak to a specialist or doctor and they look at me cross-eyed! How do you deal with the everyday pain?? I don't like taking meds so I am looking for other ideas. Have you ever had both kidneys done at the same time and how often do you go for surgery? It's nice to finally be able to talk to someone else that is going through the same thing!!!!!! Hope the stents don't give you too (two!) much trouble!!!! :)
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168348_tn?1379360675
It took me a few to find the right Uro, too .............. most just don't "get it" (sigh).

WELCOME to our community!

C~
MSK with Stones
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Avatar_f_tn
Hi,
I'm just north of Oshawa ontario. I'm 38 and was diagnosed 10 years ago. I have 3 kids and I would rather give birth than to live with MSK and stones. I have been to all kinds of specialists from London to Kingston and so far, they don't really help at all. I'm on fb or you can email me, maybe we can work together to find a cure ;)
Meredithmjackson at the hot place *******
Chat soon!!!
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Avatar_f_tn
Hi I am Schree from Ohio. So sorry you all are going through this awful disease. I have MSK and was diagnosed two years ago with it. Last year I had 16 lithotripseys and on # 5 for this year. I pass stones every day and have renal faliure a lot because I try to take my pain meds and wait them out.my stones are always between 1u and 20 mm. So painful! I just had Litho done 4 weeks ago and was in the following week for another one. Well last Weds I had to have it done again only this time they did both kidneys.I had two stents put in plus a cathader this time .stents and I don't get along they usually get clogged up on me and have to be removed in a few days but so far I have lastedtwo days with these and had one in for two weeks before surgery Weds.they are very uncomfortable and the pain is awful . I just don't understand why they can't find a cure for this disease.my body produces to much calcium to fast and they say because I am 48 they have to be careful of decreasing calcium because of osteoprosis. My question for anyone is has anyone ever had their parathyroid gland removed? Or asked about thinking about trying it? I have just read where your parathyroid gland located in the neck produces calcium and they have had a success rate in certain cases with medullary sponged kidney disease by removing the gland and taking calcium and vitamine #D to ovoid osteoporosis. Anyone heard this or do you know of anyone that has been offerd to do or that has done it? I live on pain pills every day and I am so sick of it.I would really like to find a long term treatment.I have been to 4 Urologist one was at Ohio State University he was voted #1 kidneystone dr in the world but has told me nothing more than the other Dr.s thanks for reading and listening Schree from Ohio
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168348_tn?1379360675
How are you doing? Double stents .. ouchies!~

C~
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Avatar_f_tn
This question is for people from Ontario, Canada.

Has anyone had to stop working from the constant pain? if yes, have you gotten benefits from the government for not being able to work for health reasons?
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Avatar_n_tn
Two stents... Ouch. I had one last year and it hurt so bad I pulled it out myself after only four days! I think I am what they call a no compliant patient :)
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