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

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New to MSK

I just was diagnosed with Medullary Sponge Kidney last Friday. Last December I had bilateral Kidney stones that caused obstruction and urine blockage (only on one side), which caused me to be in the worst pain and the sickest I have ever been. My doctor just told me I had quite a few kidney stones in my kidneys at that time. I woke up about a week and a half ago with that pain that just takes your breath away and knew what it was..so I went to my Universities health services. They gave me toradol and morphine and medicine to stop the nasaeu. They assumed I did have kidney stones again because there was blood in my urine. Over the past week I've had an ultra sound, x-rays, a cat scan today and blood tests and urine tests. I also went to a urologist and he told me I have MSK. The only thing is in all my tests they don't see kidney stones, but I have blockage and obstruction again to my right kidney. Which doesn't make much sense to me if I have obstruction and blockage but no kidney stones? I was wondering if anyone else has the problem of people especially doctors believing that you are actually in severe pain? I went down to health services the other night at 5AM from severe pain and the doctor said so what do you want me to do if you have tylox? THE TYLOX DOESN'T WORK. None the less I left crying and suffered from the pain for a few more hours. I also had one doctor tell me it was probably chronic back pain and that he wouldn't pescribe me medicine because I could become addicted. Does anyone else have problems with doctors actually believing you that you are in severe pain? It puts me in tears all the time, because doctors are supposed to be there to help, but they don't seem to help with this.  I'm in pain and sick ALL the time! It totally drains me.  Also, does anyone else have problems sleeping because it is way worse when you lay down? I'm totally drained from it..but the pain makes me restless.

I'm new to this..I wanted to hear what other people had to say who actually go through this. I'm only 19... Am I going to have to deal with this for the rest of my life?
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635342_tn?1222729339
Also... I have been having lower back pain ever since I was in middle school (so about 12 years old). I told my doctor when I was about 14 about it and she thought it was from the sports and activities I did in high school. It didn't get better and seems to get worse right before I pass a stone. It's just a dull lower back pain...nowhere near the flank pain.. but it never goes away. Does anyone else with MSK have this? Or is it in fact just back pain?
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168348_tn?1379360675
WELCOME to the community.  I am so so sorry you are going through this.  Many of us have had to go through more than one Dr to understand and treat us for the pain and the associated stones, etc.  This is much more than any teen should ever have to endure .. others will jump in on the thread I am certain.

I have had that dull backpain in a non-traditional area and it was there for months w/o end .. it even traveled down my leg into my groin and was stone related.  They told me it was muscular cause the pain changed wtih movement .. I dont' care what the textbooks say, it went away 100% after I passed my last stone and that was 3 yrs to pass!

They need to reassess your obstruction I would say ... why are they complacent to say from the tests there is obstruction but no stones and then let you walk away?  I would say it needs to be followed as to why it is obstructed (Inflammation, etc.)

Nice hot baths have helped me .. as hot as I could stand it for the pain .. and lying down can make things worse .. the still of the night you feel every single ping and paing.

I feel for you .. we are here for you.

Do either of your parents have history of stones?

C~
MSK with calcium oxalate stones
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635342_tn?1222729339
Well... the urologist is still in the process of figuring it out I guess. I had a catscan yesterday and blood/urine tests which I will go back to see him in a couple weeks for after the results come in. I have to assume the blockage has been fixed on its own because I haven't had the flank pain for about two days now. I still haven't passed a stone though... which is still weird to me that I had but no stone (the doctors saw this from the results of x-rays and an ultrasound... but maybe one will show up on the catscan?)...I guess we'll see what the doctor says.

And no, neither of my parents have history of stones or kidney problems.

Thanks for the response and advice! I'll have to take a bath when I'm in pain !
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489228_tn?1291535054
  
Welcome and please know that you are not alone!

Many of us live with chronic pain even when there is no stone in the ureter.  My doctor and I believe this is connected to a biofilm infection that sets up within the many calcifications in our kidneys.  This is not some half hearted theory but something I have spent years researching and have the articles to back it.  Once the infection gets within the stones getting rid of it is nearly impossible.  It does show are standard test since only a small amount sloughs off.

Recently we found a procedure done by dr. Wolf at the University of Michigan that can actually get too and rid of the stones within our collecting ducts.  I had this procedure done on Aug. 4th, I feel better now then in years... we are still fighting the infection issues but at least we now have hope to knock this out.  Some patients doctors have done this procedure, the article is listed under New Procedure for stones...I went to Dr.Wolf!

Hope that helps... you can pm me if you have more questions!

Shelly
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168348_tn?1379360675
INteresting to note, along with Shelly's post, is that once I passed the stone that caused me pain, my UTI's went away, too along with the pain.  My uro believed the infection was deep INSIDE the stone .. cause stones are pourous!

C
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Hey all, I was diagnosed a year ago. Just have a question, does anyone else have trouble urinating. I have trouble getting my stream started.  Is this a symptom for sign.
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168348_tn?1379360675
It can be a sign of urinary system involvement caused by many things .. definitely ck with a Dr., to see what's going on .. you could hafe a stone lodged.

WELCOME TO THE COMMUNITY!

Cheryl
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You could be right, I take tramadol for other reasons and was unaware of its uses until I read this site.  I really dont have alot of symptoms other than occasional back ache. Thanks for your response.
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I have been dealing with the same thing for years. It is very frustrating when the people that are supposed to be helping you don't believe you are really in pain. I am going to my first naturopathic physician tomorrow. I figure it can't make it any worse.
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168348_tn?1379360675
Oh .. please tell us how it goes at the naturopathic tomorrow .. and WELCOME to the COMMUNITY!

Have you added the Pain Tracker .. it is an awesome way to show your pain.

C~
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