Medullary Sponge Kidney Disease (MSK) Community
I have MSK and a lot of Questions?
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

I have MSK and a lot of Questions?

7724696?1330448465
Hi Everyone. I am 41 years old. A mother of Two young men of 21 and 17. Happly Married for 5 years now!
I just found out that I have MSK about two weeks ago. I had pain in my stomach and thought I was having Gallbladder trouble. WOW I have MSK. Its funny though the doctors tell me I should have pain if I am not having a stone. BULL I have pain all the time. Pings and Pangs, back pain, groin pain. Im run down.  Why Do I have the unexplained pains? Do any of you suffer with the pings and pangs all the time?
I just started a new Job and have already missed a week of work do to the fact that I can't stand or sit for long periods of time. I havent even seen the kidny doc yet to find out how advanced I have this. My urine shows little tace of blood and the ultrasound didn't say anything about stones. I have passed stones in the past and one time it was like sand in the filter. Literal Sand!  How can you explain to people you have pain here, there and everywhere?
I am also a Cronic (chronic) Migraine sufferer! Could they be related?

Is this common? I have stopped drinking cokes coffee, tea, juice, chocolate and so forth. I am on a low oxalate diet.
HELP?
Related Discussions
20 Comments Post a Comment
Blank
Avatar_f_tn
oh I hear you  Same thing, more time with pain than without no matter what I drink eat etc.  I'm actually looking at leaving a secure gov't job after 21 yrs because people don't get how this is painful and just is tiring.  I had docs tell me the same thing.  Actually I've gone to the ER and not shown blood in my urine and blood tests looked fine until I told them do tthe ultrasound and lo and behold stones and big ones  Listen to yourself and get your doctor to look at your journal of days of pain and what level.  I feel for you.  
Blank
2053959_tn?1330448602
Thank you.  Its funny sometimes I think wow I feel pretty good today. Then I do something that reminds me of this terrable thing i got going on. UGH!
My first Ultrasound didn't say anything about cysts but non of the doctors seem to know what the heck is going on anyway. He said well the radiologist didn't say if it was in the left Kidney or not. Hu I have pain in Both. Crazy isn't it? We need to find a doctor with MSK!
Blank
2053959_tn?1330448602
Oh I said in my last post Cysts but i met Stones. I have cysts for sure.

I am also Sorry to hear about you and your Job.  What do I have in store? Does this just keep getting worse As I age or what? I can't seem to find the answers I am looking for. Blog after blog and still more Questions.
No one gets it but MSK sufferers. Any insite would be fantastic.

Thanks so much and God Bless!
Blank
168348_tn?1379360675
This MSK can change from day to day, so it's not easy to predict the future unfortunately. Mine has been pretty much the same for the past few years, with some months of remission actually!

C~
Blank
Avatar_n_tn
Amen! The doctors always want you to think just because you aren't having a stone, you shouldn't have pain, BULL! I am 27 years old and I am seeing a nephrologist at the Mayo Clinic for my MSK. He told me that it is natural to have pain with MSK with out a stone. Of course it will be worse with a stone, but the pings you are feeling are exactly how it feels. Like a mini stone, but it never gets really really bad. It just stays painful. I am lucky enough that I work in a jewelry stone and my boss is amazing. He has been so understanding, but I know how difficult it is to have a rough night and not be able to work because you feel so bad. It litteraly can change from week to week and from day to day. Do you have a pain doctor you see? What are your doctors telling you?

Amanda
Blank
Avatar_n_tn
P.S. its funny that you described that sand. I get that a lot. I tried to explain that to others and its hard. When I asked the doctor at the Mayo, he told me that its the crystals that make up the stones. Either your body is breaking them up on their own (my seems to do that), or you are passing them so they aren't clumping together. That doesn't mean its not painfully. It can be just as painful.
I used to get migraines too but I don;t think they have anything to do with MSK. Wish I could help you there.
  Something else you might want to find out (and I will just warn you in advance.) My nephrologist (a kidney doctor) told me that I am now starting to have the crystals go into the tissues of my kidney, other wise known as nephrocalsinouis or something like that. Basically, to the doctor, it can look like a giant kidney stone but its not. The sand is starting to turn your kidney into a giant kidney stone. Eventually it will get to the point where it can't function but if you let a doctor go in to remove "the big stone", they cant. the particles are in the kidney.
  Hopefully you hear good news though and you get the answers you are looking for! My thoughts and prayers are with you!
Where does everyone live? I live in Cincinnati, so its made it rather difficult to find a good specialist. Sometimes I have had to travel great distances (which isn't cheap) just to get the answers I was looking for.
By the way, what is everyone's doctors doing for pain management? My doctor and I are running out of ideas.
Blank
Avatar_n_tn
My son also has MSK. He is 16. He has had it for a few years now. He also has issues with migraines and "sandy" urine. He has passed many small stones but now has a large one in his left kidney. He is always in chronic pain and the only things that help are ice packs, heating pads and Rx drugs like Vicodin, Suboxone and Oxycodone. He can't take these and attend school at the same time so he suffers through school days (when he's there at all). We finally found a doctor who can help him. Dr. J.S. Wolf with U of M. He was scheduled for Ureteroscopy Holmium Laser Lithotripsy in April but we moved it up to next week because his pain has increased to a horrible level. Some days he is in so much pain that he can't even eat. He has lost a lot of weight because of this. We're hoping that this surgery will end some of his pain. Although its not a permanent fix. We were told that it may only last a couple of years and then he will need the procedure again. But that is a lot of days WITHOUT Rx drugs.
Blank
Avatar_n_tn
I feel your pain. I am so sorry for your son. I too have battled the weight loss and such. I was diagonoised with MSK when I was 17 and barely went to school because I was so ill. I have had the lithotripsy and although it can help with the stone at the moment, it isn't a long term solution. For me, it caused more pain later because I felt each and every stone partical as they came down. The sand, hurts sometimes just as much as a full on stone. Do you have a nephrologist? I have been seen at the Mayo Clinic and they always told me Urologist are good, but they only know how to help short term (like surgery), they don't know how to help long term (like with diets and such.) A nephrologist should help watch your son long term and help with prevention.

Best wishes,
Amanda
Blank
Avatar_f_tn
I feel your pain -- literally.  I just got home from a 3 day stay in the hospital for a kidney stone and infection.  The infection is what almost killed me.  I was spiking a fever of 104.  They sent me home with a stint in my urethra which frankly hurts as much as the stone.  I have to wait a whole week for my next appointment to see if it has passed.   I was diagnosed with MSK at 33, when I was 8 months pregnant and passed a stone on my own.  It too looked like grains of beach sand.  Aside from my constant battles with UTI, I had not had many problems in the past 8 years aside from those "pings and pangs" you describe.  This last bout by far has been the worst and has turned my life upside down.  I too, suffer from migraine headaches which just seems to add insult to injury.  
Blank
168348_tn?1379360675
Sorry about the pain and hosp stays in above posts ... My heart goes out to all of you.  I currently have a whopper of UTI going on .... I wonder if we ever really are UTI infection free or does it just not show + on the rechecks (sigh)

C~
Blank
2053959_tn?1330448602
Thanks everyone for the comments and concerns.
I am going to see my nephrologist tomorrow for the first time. For pain I take oxycodin. Thats all I have at this point. I don't even know if I have it in my left kidney yet but I can tell you I have more pain on my left side than right. Good days and bad days seem to be the norm. I went to the doctor for stomach pain and they told me I had MSK. I am still having stomach pain that is in question. I guess it could be related to MSK. Do any of you hurt in the upper abdomonal area? Almost like a ulser feeling? I am so sorry for everyones pain. I would only hope that us talking with each other will help us get through. My Regular Doctor really plays down MSK. He has never had a patiant before with msk and doesn't know how to treat me.

I have only had a very mild UTI lately and they can't get a clean cluture on me for some reason. it keeps coming back as unreadable. ??? I have to be cathed next time I go in which is tomorrow!  Do any of you do that too?
I have lost 10 lbs now in about 5 weeks. I was 130 lbs and now I am 120lbs. Its nice to lose but not nice to starve. I am on a very low to no oxalate diet. I have given up Pop, tea, COFFEE :( salt and animal proteines. I eat fish though and mostly salads.

My pain is mostly in my left upper back around the rib cage. Do any of you feel that too in that area. Almost like I don't want anything to touch that area.   Have any of you had a bout where you can't stand clothing, or anything to touch your body? Does that sound weird? Hot bath and lying in bed is about all I can stand sometimes. Let me know if any of you have the same thing happen?  Im sorry to hear about the children having this. my heart goes out to all those babies. I wish we could protect our children from such things.   You guys and gals keep me posted on what is gong on with you. I will post after my Docs visit tomorrow!     Diddy =0
Blank
168348_tn?1379360675
I was cath'd once to be certain the hematuria was Uro related and not from monthlies, etc.  And, oh yes, it was + .. I had lost 10lbs and finally after a few rounds of antibiotics the UTI got cleared up. Every single culture was negative, yet the URO and I both knew I had a UTI!

First morning urine .. that finally worked.  I keep sterile lab cups on hand and take them with me to the office visit.

I get pings and pangs on my right kidney when there's a stone moving around .. usually always on the right and not the left, but I get stones in both + have the MSK in both.

Please keep us posted with your appt and PS:  Love your horse!

C~
Blank
2053959_tn?1330448602
Ok I went to the nephrologist and that was a JOKE! He was very rude.
He told me that it was a progessive and that there was nothing he could do for me. WTH????? I waisted my time and money on a Doctore that wasn't willing to help me. He told me to manage it with pain pills and when I am in to much pain to go to ER.  I felt like I was a loss cause. WOW I thought Doctors were here to help. All he wanted was his pay check!  The truth is He didn't know how to treat MSK. He wasn't willing to work with me.
Made me sick! Now all I have is my Reg. Doctor. He is trying to help me but he told me I was his first patiant with MSK and hes been a Doc for 40 years. I am glad I have people to talk to on here about this. There is sure no one in Oklahoma to talk to about it.  Thanks for listening.
Diddy
Blank
168348_tn?1379360675
Oh Diddy ......................................ouch

What a crud of a doc appt.

We are here for you ... I can feel your pain.

C~
Blank
2053959_tn?1330448602
Hey everyone. Hope all is well with you. I would like to hear from others on this and keep up with how you are doing. Please!
Have any of you tried to get Disability?
Blank
2053959_tn?1330448602
Hey can you get Disability with MSK?
Blank
Avatar_n_tn
My son had his surgery on Mar 12th. The doc removed 4 stones from the right kidney and 1 large stone from the left. Recovery was very painful for him. Had to go back to the ER for morphine to help the pain. Got a fever a few days after that. In the end, the surgery didn't help much for his overall pain. His right side still hurts all the time. He's hardly at school and I have to get his work from the office. He's seen a nephrologist who give him Rx to help new stones from forming. But that's it. The urologist said to come back when he has new stones that need to be removed. The poor kid has no life. We just had more blood work, urine and x-rays done. Waiting for results. Infection? Blockage? I wish someone could help him.
Blank
2167132_tn?1337122950
Sorry to hear about others dealing with this horrible issue. But at the same time it makes me feel better that I am not crazy. I have the aches and pains and it comes and goes and no body understands.
I see a Nephrologist every few months when I can't take it anymore or when my Tylenol #3's and parydium run out.
Got diagnosed 2 years ago when I was pregnant with my youngest with MSK.
I am glad we all can replate and help each other through this.
I was talking to my husband and he is tired of seeing me like this up and down with being sick with this trying to take care of our 4 young children. He wants me to try other alternative doctors. I am very open to try things to help with this.
Any of you tired more of a natural way to dealing with this?
I really hope your son feels better soon and you can find something that helps him.
Thank you all for being here and sharing your story.  
Blank
2168106_tn?1337161744
i was diagnosed 2 days ago w severe msk my kidneys are mush at this point. im scared to death and have no idea what to expect. my doctor was talking about its terminal but everything i have read says its not... can someone please get me some info i have no insurance and quite frankly was misdiagnosed for several years now, im in so much pain it hurts constantly and the only thing i was prescribed in the hospital was stupid tramadol which does absolutely nothing! can anyone tell me maybe a home remedy to ease the pain. i also have gallbladder disease and 2 stones in there so i am just in so much pain i dont know what to do it hurts so bad all i am doing is crying i have never in my life experienced this kind of pain, now im being told i am going to die without proper treatment and i dont know what to do. i am in panic mode at this point.
Blank
Avatar_f_tn
i am so sorry you are in pain, try to stay as calm as possible and not think negatively  Look for a second opinion, or call the nurse of the doc you saw an explain how you are overwhelm by the info and would like them to clarify it al too you...
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
The 3 Essentials to Ending Emotiona...
Sep 18 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Control Emotional Eating with this ...
Sep 04 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eating Control: How to St...
Aug 28 by Roger Gould, M.D.Blank