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Medullary Sponge Kidney Disease (MSK) Community
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Hello I'm New

Hello Everyone I am somewhat new to this board although I have been lurking for a while and I was coming here for some support. Here is some info about me, I live in Las Vegas, I am a 24 year old mom of 2 boys, ages 4 and 1, and I was diagnosed with MSK 4 years ago after the birth of my first son. The condition is really starting to wear on me and the pain and tiredness is making it EXTREMELY HARD to keep up with a full time job and raising my boys. What are the chances of me being able to get disability assistance from work for a while. I constantly fill up with stones, I have had numerous lithioptripsys and the stones keep coming back, the Urocit K tore my stomach up and I got an ulcer from it and the more fluids I drink the more blood is in my urine. I find that all of my doctors think I am full of it (i am going to yet another urologist today) and I am getting VERY DEPRESSED over all of this. Here is what my latest CT SCAN said "bilateral punctate kidney stones are seen, Amorphous density and calcification is seen in the pyramids bilaterally consistent with nephrocalcinosis. No hydronephrosis is demonstrated."

Although it says the kidney stones are small they still hurt when there are a lot of them and I still pass them very often. Can you please help me even if it is just offering support. I was thinking about being seen at the Mayo Clinic do any of you have experience with that?

Nicole :)
1 Responses
592774 tn?1325397342
Nicole, You are definitely not alone anymore. You have your hands full with the boys, a full time job and a chronic illness. Hopefully we can offer you some advice from our experiences. The urocit K is really rough on our stomachs..sorry about the ulcer, wow!
I made a website about my how I cope with the constant kidney stones. Maybe you can find some help there too. http://www.medhelp.org/health_pages/Urology/Oh-No-A-Kidney-Stone/show/406?cid=185
The health pages (at the bottom of this page -> have a ton of information.
Being believed goes a long way toward relieving the depression.
Here are some of the things that have helped some of us that many docs are not aware of yet:

Treating Low Vit. D.

Long term antibiotic therapy

Silver-Biotics

Ureteroscopic holmium laser lithotripsy and papillotomy (Dr. Wolf's procedure, but can be done by other uro's)

Take care,
Nancy
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