Medullary Sponge Kidney Disease (MSK) Community
Please Help!!!
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Please Help!!!

Please anyone help..... I have been dealing with kidney stones for the past year, which actually started with my pregnancy.  Now, a year later and 8 months of giving birth, I am still experiencing bilateral kidney pain.  I have had stents and cystoscopies and ureteroscopies, let alone I have passed so many stones, don't even know the count just know how bad my kidneys are scarred from it.  I just had my last surgery at the beginning of January and they removed 5 stones and put in bilateral stents.  Of course, I ended up in the hospital because of one of the stents was too painful-vomiting,fever, etc.  They took both out a week later.  Now, my urologist says that I should be on the healing side of things, even though I am continually asking for pain meds, I am afraid he is going to cut me off because I can tell with him he doesn't think I should be in pain with these tiny stones and calcifications.  I haven't been diagnosed with MSK but with the chronic pain in the kidneys you guys talk about, that is so me, and no one believes me when I say that my kidneys hurt even make me sick some days.  Please I need help!
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489228_tn?1291535054
I would say that it is VERY likely with all the stones and procedures that you have a chronic infection.  A chronic infection does not always show up on standard testing, UA cultures etc.  Has your doctor tried putting you on a long term antibiotics and see if the pain disappears?  You need to understand this will not happen overnight however you should see some improvement in 10 days, the increasing improvement over time.  You may require many months on antibiotics, so you need a doctor who treats the complicated infection.

I would encourage you to go into the health pages on this site that also lists some ideas and suggestions we have found helpful with the chronic pain.  Another thing you may want to do is ask the URO to test your Vit D levels.  There is a a thread on this as well as health pages etc.  I also wrote a paper on biofilm infections that might be on the healthpages in not it is included on my website below on the menu item for MSK.  I hope that helps you and gets you on the road to less pain... but stay in touch and let us know how you are doing OK?

Shelly

Shelly Matthewson
Private Researcher
IC Support Group Leader
Director of MOARK Interstitial Cystitis
www.moarkic.com
"And we know that all things work together for
good to them that love God, to them who are the
called according to His purpose."Romans8:28
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686246_tn?1252428681
Shelly how do you reply to a comment, or discusson that's what I'm having problems with.
Shouldn't this lady who's never been diagnosed go to a nephro or a uro who would do an ultrasound for her, Mine was discovered with an IVP,, MY uro just said, the location of the stones, all clustered up was a tale tale sign of MSK, and then recently i had an ultrasound, and it was very apparent, even I could see the stones in the ultrasound, shouldn't she go there, even with the diagnosis, there's still little hope of the understanding of the pain issues, i've finally got into pain management, and now get plenty of pain meds, but Like I told them, If i take my antibiotics, twice a day, I don't hurt as bad, They still suggested, while I'm having back issues to take every 6 hours, and My husband wakes me at 5 am to take my pain meds so I'll wake up better, if not, I wake up screaming, not only from my kidneys but full bladder (extremely painful)lately and kidneys, and back both are sore, and my back is excrusiating, kidney pain is now more of a heaviness (?)dull ache, with some occasional stabbing sharp shooting pains that come out of nowhere.... ook,, blabbed enough.
amie
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686246_tn?1252428681
k figured out how to respond to questions now.. I guess you just send the comment to the person who posted?
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489228_tn?1291535054
Actually at the bottom of the page it should say post comment.  You have to be signed in though.  It then post it on the board not directly to the person, but if they have clicked in the (watch this thread) on the top right side of the page it will also send you notices of any answers.  However you have to set up how often in your profile!

If sick of stones has not yet had an IVP , sonogram etc. then your right that really needs to be done.  However, I was assuming that if she had surgeries these were done first but maybe not.  I would say even if they have not diagnosed MSK to get the radiologist reports since I have often found things they didn't tell me.

Amie,  I am so glad you posted and that you finally are getting some pain management!!  I have been soo concerned.  It can be from the infection issues but the bladder pain I am afraid sounds like IC (Interstital Cystitis).  Go on my website and read more about it and see if the symptoms fit you.... I will try to e-mail you the info as well!

Shelly
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592774_tn?1325397342
All my kidney issues came to the surface after my first pregnancy. I have heard that from several other women with MSK.  It seems like that is a time when our kidneys are working harder and the extra stress on them exposes the underlying condition. The pregnancy does not cause the MSK, we are born with it. I had my first kidney stone 2 weeks postpartum and had blockage, cystoscopy, then hospitalized for 4 days with a kidney infection first time 18 months postpartum. after 3 kids it is a normal part of my life.
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My last IVP was last July, and they did not say anything about MSK just that I had alot of calcifications and many tiny stones floating around, so when my pain was still bothering me, my uro did cystoscopy in September to laser all the tiny stones and that is when he found with the scope the 7 stones attached to the papillae, he said some were tiny and a couple were bigger, but they were not detaching so I could pass them and this is what was causing the pain.  He did not remove them at that time because that is not what he went in there to do, so he stopped the procedure and told me to give it time to see if they would detach on their own.  Then, I had my last surgery last month because of course the pain was still there, and I had 4 removed from my right and 1 from my left, but he keeps telling me that he got out all he could, making me think he didn't get it all cause he keeps saying they are just so tiny. Well, all I can say is that all these tiny are causing so much pain.  But this whole time he has never said anything about MSK and never sent me for an ultrasound.  Do you think that all these tiny stones are MSK??
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489228_tn?1291535054
tiny stones in the papillae sounds like it however their maybe other conditions that cause this too I am not sure.  I would request a copy of you IVP radiologist report and see if they mentioned MSK.  I knew I had the stones 7 years before I was given the diagnosis by the way!  I would also ask your doctor if you could have it.  With the stones with MSK these tiny calcification many are actually something called Randall's Plaque that attaches to the collecting ducts themselves.  There is no way to get them all out since these are deep in the heart of the kidney.

Either way stones are not selective MSK or not about forming biofilm infections or having the same pain issues the rest of us do.  There is a list of things we have found helpful with the pain levels in the health pages, as well as an article I think it is there now on Biofilms and MSK, if not it is on our website below under the MSK menu item.

You might also ask them to check you Vit D levels.  So far now all of us have been low,,,, I just got my report back yesterday.  This can increase pain, make pain meds work less as well as antibiotics!!  I had to ask my URO to check it and he didn't even look at the report till I came in.  I am very low in potassium too which could explain the tiredness.

If you have any trouble finding those articles pm and I will send you the direct links etc.I can only come in here at night though


Shelly Matthewson
Private Researcher
IC Support Group leader
Director of MOARK Interstitial Cystitis
www.moarkic.com
"And we know that all things work together for
good to them that love God, to them who are the
called according to His purpose."Romans8:28
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