Medullary Sponge Kidney Disease (MSK) Community
MSK and not taken seriously
About This Community:

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

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

MSK and not taken seriously

Needing some advice on my next step here. I was recently diagnosed with MSK with small stones in kidneys. None in ureters. None have passed that I have seen. I saw my primary doctor today for some relief of right rib and back/flank pain that is really taking its toll. Drinking more water, ibuprofen, and hot packs are not the answer. He actually suggested we test for inflammatory bowel problems (IT IS NOT MY BOWELS, I KNOW THAT!) and basically said to live with it and didnt really think the MSK was to blame for the pain. Advice, please...
Related Discussions
17 Comments Post a Comment
Blank
Avatar_f_tn
Hello and welcome. I just happened to still be up at 1:15am and saw your post. I am plagued with insomnia frequently - something I have dealt with for years unfortunately.

I'm sorry you are having difficulties with your PCP. Have you gotten a referral to a Urologist or Nephrologist yet? This should be your next step in my opinion -you need a specialist. PCP's are great for general stuff, but this disease is complex at times. Unfortunately, even these specialists are not easy to deal with when it comes to MSK and it's difficult to get your point across at times. It seems that every story I read on here is the same..doctors don't want to acknowledge the pain that accompanies MSK, and in many cases (mine included) we end up in Emergency Rooms just to get a little relief. This is extremely costly though but what else can you do? There are several members on here that have turned to Pain Management and they say this helps tremendously in dealing with the constant pain. I am having major insurance issues right now, but I am researching this as an option for myself. It's much cheaper than going to the ER, and seems like there would be a better chance of getting longer relief times..my ER only gives me 15 pain pills at a time and I end up stretching them out for weeks so I spend much of my time in bed, in pain.

It's important to note that many of us suffer with pain whether there are stones present or not. Luckily for me, my Nephrologist is much more understanding than my Urologist is but I don't see him as much so it doesn't help a whole lot. I hope that you can find a doctor that is willing to help.

Best wishes,
Mary
Blank
Avatar_f_tn
Thanks for your reply! I didnt get a referral (yet) because he totally blew it off as "some people just have it on CT and they find it by accident" and it shouldnt be harmful or painful. Like I said, he tried explaining it off as irritable bowel or something...Yup, referral is in order, just hope he provides it! I am not "drug-seeking" either, just RELIEF-seeking! This is so frustrating, but Im glad I found this board!
Blank
Avatar_f_tn
I was lucky in the fact that I did get a referral, but unlucky that I had to go to the ER in excruciating pain to get it. I had just moved to Florida and didn't have a PCP at the time. I was able to get into a Nephrologist on my own, without a referral though. I called around (I was looking for a second opinion on the surgery I was told I had to have). You may be able to call around as well - if you can find a receptionist that's willing to listen and can explain your situation effectively, they may be able to get you in. It's a shame we have to resort to "tactical maneuvers" as patients to get anything done, but at times when the pain is too great, you don't have much choice. Good luck! :)
Blank
168348_tn?1379360675
Hi and Welcome .. so sorry your PCP is like this .. you deserve better.  We are here for you anytime to vent and maybe show him some of the articles in our health pages.

http://www.medhelp.org/health_pages/list?cid=185
Blank
Avatar_f_tn
ah the old irritable bowel  diagnosis. How many times have I heardthat and not only during kidney crisis.  one er doc said it wasn't stones, kidney problem blah blah, even though history was at his electronic finger tips since no blood in urine and blood test looked normal.  Finally had him do an ultrasound  low and behold ballooned left kidney and 3 stones big *** 7.5 had burst through and in the urthea.  oh and I said well of course I look constapated, when in pain do we tighen everything and pain pills cause blockage, but the big thing is hello if something is swollen in the ab area, it's going to squeeze on to something else.  As I told my urologist later, this doctor based it on no blood trace etc.  and since i drink a look of fluids like I'm suppose to guess what not unusual for it not to show up.  take care.
Blank
Avatar_f_tn
Ironically, the topic of digestive problems was brought up in my MSK Facebook group just the other day. I wanted to share this with you because after participating in this discussion, you came to mind. I was diagnosed with IBS many years BEFORE I got my MSK diagnosis. I suffer with chronic diarrhea and am in the bathroom 4-5 times a day, sometimes more depending on what I eat. If I'm on pain meds for any length of time it goes the other way. I hadn't really given it much thought until I learned through my new group that many of them suffer with IBS too. While this is COMPLETELY DIFFERENT from our daily, chronic kidney pain, this seems to be something else we all have in common and I am beginning to see a pattern here. Some of them have problems because of the meds they are on, but some of them are like me. It seems like it may not just be our kidneys, but our entire "filtering system" that is out of whack and I'm beginning to think MSK and IBS go hand in hand, and I am contemplating on including this in the research project I'm doing. I still stand by what I told you in my previous responses regarding the referral, but it may be a good idea to do the test for IBS too, just in case you are like the rest of us. Good luck & please keep us posted :)

Mary  
Blank
Avatar_n_tn
OK, so now the question is, when the Nephrologist told my newly diagnosed son that MSK doesn't cause pain, but he should be checked for IBS (after a dozen previous tests from a gastro showed nothing), what am I to think?  I was discouraged because I've seen IBS blamed for anything they can't find!  But maybe the Nephro was more savvy about a connection than I thought?  But do you agree that MSK won't cause flank pain or abdominal tenderness when there are multiple calculi in the kidneys but not being passed?  When the pain eased for one day last week, my son said his abs hurt really bad, like he had done a heavy work out.  

Any info is going to be helpful as we just finally got a diagnosis for him. Is there a link to the FB page you mentioned for MSK?  Thanks!
Blank
Avatar_f_tn
No I do not agree that MSK doesn't cause pain. I have been told the same thing by several doctors, but they couldn't explain to me WHY I was/still am in so much pain all the time. This is a very common misconception on the part of the doctors. All you have to do is read through the hundreds of posts on here by people who have been diagnosed with MSK and are suffering from chronic pain all the time. To me it makes perfect sense - the kidneys are major organs in the body and when they get calcifications in them they can't filter properly. All major organs of the body have nerves, why would the kidneys be any different? The kidneys are basically "hardening" and there's no way to go into the tiny ducts to remove the calcifications. To suggest that this DOES NOT cause pain just doesn't make any sense to me. It is a perception that we patients are trying desperately to change.

How old is your son? So far from what I have gathered, it's mostly women that are diagnosed with MSK, but I have also run across men on here that have it. The best thing you/he can do is start thoroughly researching MSK. I must warn you though, most of the medical research indicates the same thing you have already been told - it's a benign disease, doesn't cause pain, etc. That's why forums like this where patients can come together and discuss this disease and the research we've all done on our own is such a blessing. It helps to know that you are not alone. As far as the Facebook page, if you go into search and type in Medullary Sponge Kidney, you should be able to find us. I don't have the exact link, but I'll see if I can find it for you.

Best wishes,
Mary
Blank
Avatar_n_tn
Thanks for your input.  I just found the FB site yesterday (if it's the same one) and have already had some wonderful feedback there.  I am going to copy your last post, along with some other descriptions of the pain, and take them to our good family doctor.  He's heard our son's descriptions of identical pain symptoms, seen the gastro tests come back negative, and so I think he will be responsive about the pain questions.  Plus, he's been in practice for so long that he knows he doesn't know everything- which is a rare quality in doctors these days, it seems!  Thanks again to everyone.
Blank
Avatar_n_tn
Just wanted you to be aware that my nephrologist is very adamant about me NOT taking NSAIDS since I have MSK. That includes Ibuprofen. It`s just not good for your kidneys...not even good for healthy kidneys when taken for long periods of time. Just be careful. I was diagnosed 2 yrs ago. Have a great doctor and not too many symptoms other than occassional left side/flank discomfort, kidney stone once, and now having high blood pressure issues. I am 34 yrs old. Hang in there and good luck.
Blank
Avatar_m_tn
I am so sorry to hear about your problem. I have passed over 500 hundred stones,so i know what your are going through.A little advise go on the inter net  and find a DR. knows a lot about msk.Let me tell you this there is nothing they can do.You need to go to a pain management and get some strong pain med.I have been lucky i am a vet. and they have smart DR. he knew right away.Trust me its only going to get worse without pain med.I have to take morpine two types 6 times a day the va is so good.Get a GOOD DR. and a pain  management as soon as possible.also try to get on disability.
Blank
168348_tn?1379360675
Thinking of everyone on this thread ... I feel your pain .. we are here for you on the community .. keep posting and keep in touch with us please!

C~
Blank
Avatar_n_tn
you said your a vet? My husband is in the national guard and I guess i have always been nervous about trying a VA. I have had MSK for quite a number of years now and my pain doctor and I are running out of ideas. I just had the trial for a neurostimulator which was horrible. Of course the meds help for a while, but for some reason, the heavy pills never really work on me. The only relief I seem to get is from shots of pain and naseua when I have a super bad attack. Are you seeing a pain specialist at the VA? What are they saying?
Blank
Avatar_n_tn
sorry, I meant that message to go to Stoney... I was just curious if they were telling you anything else perhaps that the regular doctors havent tried yet.
Blank
Avatar_n_tn
BTW, how is your condition now? Are they still giving you trouble? have you found a better doctor that is willing to help you (and not blow it off on stomach aches and pains?)

Amanda
Blank
168348_tn?1379360675
Yes, please stop by with an update ..

Thinking of you!

C~
Blank
2053959_tn?1330448602
Ad me in your research. I have IBS with cronic (chronic) constipation. I have to take two stool softners once a day and wait two or three day before i have a BM.  I have had that problem way before I was told I have MSK.
I also have a Ulcer.  Doctors realy don't think MSK should hurt.  I wish I could find a Doctor that had MSK, maybe then they could relate.

Take Care.
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Medullary Sponge Kidney Disease (MSK) Community Resources
RSS Expert Activity
242532_tn?1269553979
Blank
Emotional Eating Control: How to St...
Aug 28 by Roger Gould, M.D.Blank
233488_tn?1310696703
Blank
New Cannabis Article from NORTH Mag...
Jul 20 by John C Hagan III, MD, FACS, FAAOBlank
242532_tn?1269553979
Blank
3 Reasons Why You are Still Binge E...
Jul 14 by Roger Gould, M.D.Blank