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Medullary Sponge Kidney Disease (MSK) Community
515 Members
Avatar universal

Glad to have some similiar people to talk to...

Hello, I am new at this so please excuse me on having no clue what I am doing...lol.  I was diagnosed(Dx)  with MSK on my right side last Wed. night in the ER here in Midwest City, Oklahoma.  I went in because I was having some lower back pain and alot of burning in my urethra...it almost felt like when you get soap in it?  Also, my bladder felt like It was contracting? Almost like a uterus when it contracts with a baby? I know its really wierd?  I have history (Hx) of a hysterectomy, prolapsed bladder, rectum, and vagina.  I am already sopposed to be seeing either a Urosurgeon or a Gynosurgeon for that issue. Then when they did the ultrasound to see if I had stones causing my pain...the lady looks at me and says, "have you ever been Dx with kidney problems?"  I replied with "UH, NOOOO????" very scared now...I was panicking and she wasnt allowed to tell me what she found only the doctor could tell me...I told her I was a CNA and realized HIPPA guidlines but couldnt understand how someone can ask you such a scary answer then expect you to just wait...??  But, I did....and the Dr. came in and told me, yes ma'am you have stones...you also have a birth defective Rt. Kidney....she sent me home and told me to call my doctor for a referral to a uroligst/nephroligist...she did give me some perkocet and cipro...so I took my meds as prescribed and felt no better three days later...the perkocet was causing an allergic reaction...so my husband took me back to ER and they preformed a CT scan...told me the stones still had not passed, and sent me home with toradol and ultram...which is like motrin in my book...I was not too happy!  so the next day I went to a diffrent doctor other than my PCP..he saw me and was wonderful...a lil honest  but wonderful...he explained in detail as much as he knew about this MSK and gave me this website and some other literature.  I bluntly asked him if death was possible...and his answer was yes...everything is possible..and told me that if the kidney was not functioning correctly that dialysis and renal failure could be possible but not for decades and decades later (I am only 31)...which sent me strait into panic mode...(I have been having ALOT of anxiety attacks since learing of this MSK, and not to mention my husband lost his job the day after I learned of it)  He gave me anxiety meds (ativan) and darvocet and toradol for pain and discomfort...told me to go ahead and conitue to see my PCP so they can refer me out...so I did this morning...and she is going to refer me to a nephroligist wants to do some urine tests and bloodwork.  I requested a 24 hour test but not sure if she paid any attention...she acted like I didnt know what I was talking about?....I am very scared...for reasons beyond my control...mainly due to having 3 beautiful lil girls all under the age of 12 and do not want something that is going to take me from them anytime soon..nor do I want my children having to deal with any of mine or my hubbys issues because most all of what we have runs in familys...My husband is diabetic, I have high blood pressure, and now this MSK...I am just hoping to keep them healthy...so July 1st we are all going to change our diets and start excersizing (which I hope is okay with MSK)  I am extremly worried about polycystic kidney disease...I have alot of symptoms of it...the only one I dont have is brain anyorisms but I do have tons of headaches atleast one a day.  I just hope to get some answers soon...I just want to know point blank what this kidney is going to do to in the long run.  I dont think my mom or dad have it...my mom says she retains alot of fluid and is on water pills but has no clue if her kidneys are normal, and I dont talk to my dad so I have no clue on him?  Oh yeah BTW, I am on hydroclorthiazide for my HBP..so have no clue if that effects MSK?  any info you have I would love to know EVERYTHING on this MSK...very scared and needs to know more...I will keep all of you in my prayers...so anything you can tell me I would LOVE to hear!!
7 Responses
168348 tn?1379360675
COMMUNITY LEADER
I promise to write more later; I am diagnosed with MSK with stones ..... my urologist who is world reknowned said, yes, 1% possible serious complications are possible.  

Does your kidney function ok now?  All tests show ok, but reveal MSK?  I ask this bcz if the answer is yes you most likely will be ok!!!!!  Stones may be a lifelong problem; or they may come and go .. I am stone free for a few months now and have not produced any in 3yrs .. YET others on this community continously produce them.

I am very pleased your Dr. referenced this site.  WOW and thank him/her for us!

I am sure others will jump on in the thread with even more info ...

WELCOME to the COMMUNITY!!!!

You have found a wonderful place to give, get, gain and share advice!

Cheryl MSK w/stones (calcium oxalate)
Avatar universal
well they havent preformed the tests yet...i went today to get the 24 hour urine test that I am going to start tommorow and they want tons of bloodwork when I bring it back in...BUT i just got some MORE bad news...about an hour ago the hospital called where I had my CT done in the ER and told me they found a spot on my liver during the CT scan??...they want to run more tests on that...I was pretty shaken up when she told me on the phone that I dont think I caught everything she said but seems like she told me that I have a dense spot on my liver and they need to run a tube into my liver to put dye into it and run another catscan...so I am pretty shaken up and VERY scared right now....please keep me in your prayers...I have 3 lil baby girls...I cant be sick...and I am gona keep all of you in prayers also!  
168348 tn?1379360675
COMMUNITY LEADER
I have a good friend on the thyroid community who is undergoing major liver tests right now and has had many tests ... maybe she can help you in that regard with ?'s to ask, etc.  

I recommend you write all your ?'s down and start a diary-type book to jot down symptoms, ?'s, meds, tests, results, etc. bcz it makes it much easier when you go from specialist to specialist.

I have had cysts on my kidneys that come and go.

Please know you can PM me anytime ... we are here for you!!!

Cheryl
489228 tn?1291535054
grr just delate a long post and don't have the energy to redo it.
Welcome... I have MSK with both kidneys so full of stones that they can't count them.
I also have a chronic infection, Interstitial Cystitis,and Pelvic congestion syndrome.

I know it is scary but please know there is some exciting new research going on in this area,  There is a new procedure that can clean out all the calcifications in the kidneys.
I have been referred and hope to have this done in the weeks to come.  At that point I will post all the info.  Just know there is hope on the horizon, oK

Also 90% of the MSK is benign for the 10% of us with problems they are finding we also have a metabolic issues that cause the problems.  Hopefully your tests will find these and they can put on medication like UROCIT-K which will help prevent you making new stones.
Polycystic Kidney disease would show with LOTS of cysts in your kidneys.  Did they find any on the CTScan?

Here are some good articles on the basic info.
http://www.****.com/

http://www.****.com/

http://www.****.com/

I will post more as I am able!  Welcome, and  one of my favorit words of advice is
"Don't live a lifetime in today...., basically the what IF"s will get you.  Tomorrow everything can turn around.., Enjoy the good days... and rest on the bad!
Trust me this is survival to your santity and your kids.  None of us can handle all the things that might happen with this disease etc. nor can I handle passing all the stones of tomorrow,  I can only deal with the one hurting right now!  My oldest son is in Iraq...
this was the one thing I never wanted to have to go through.  Yet, the Lord has protected him over and over.. better then I ever could!  It is not easy knowing he is constantly in danger but I have to go on living too,

I do hope this helps you stop and enjoy the sunshine and the smile of your little ones that are changing so quickly from day to day.  Just don't let the storms of tomorrow rain on your today!  However that said this is place for you to vent those feeling and fears so you can go on!  We all have down days... and that's what it is hear for!

Shelly

158939 tn?1274918797
Hi - I'm so sorry for all you are going through!!!  I am the one that ChitChatNIne mentioned from the thyroid disorder community.  The test that they are talking about is called a ERCP.  I haven't had one but that's what I'm scheduled for next month.  Basically, the way my GI explained it to me, is they run an endoscope (scope through your mouth into your stomach) while you are unconscious (thank goodness).  From there they go into your bile ducts where they insert catheters and force an iodine solution into them then take x-rays to see if there is any blockage.

I understand the feeling of "I can't handle one more thing!".  Prior to finding a small nodule on my thyroid through a completely unrelated scan in '03 I was fine.  Now, five years later, I've been through two thyroid cancer surgeries, one recurrence (and it looks like I'm having another one).  I've also had to have my gallbladder and ovary removed.  The treatments have also caused arthritis and, since my last radioactive iodine thyroid scan horrible liver pain (hence the ERCP coming up because they can't figure it out on any of the other tests I've been through).  Oh, and on my last thyroid cancer scan it shows a small spot in my head.

Yeah - all of this $uck$ but, like you, I have children.  I'm a single mom and I don't have a choice but to go through all of this garbage to stay around as long as possible for them.

Trust me; you won't remember half of what the doctors tell you.  Get *EVERYTHING* in writing - even all of the records from your ER visits and tests there.  Throw a fit if you have to but they HAVE to give them to you.  Keep track of everything - meds they put you on, tests they talk about . . . everything.  Then check them all out.   It was only through the power of Google that I found out I can't have my next cancer treatment for about 4 months after having a CT scan or ERCP because of the iodine.  No one bothered to mention that - just one grumpy old patient and the power of the Internet.

If you find something on line (or from the doctors, etc.) don't take it as the gospel truth!  Ask others who have been through it (like on the forums here) and do your research.  Sometimes there are tests and procedures that are run which have nothing to do with your condition and - even worse - could aggravate another condition or prevent a necessary procedure.  Check it all out.   Like with the CT scan that they gave you - that can have real detrimental effects on people with compromised kidneys if contrast medium is used.  It can be *very* harmful for people on the diabetes medication glucophage (which no one at the hospital asked me about last time - good thing I knew NOT to take it for a week before).

I wish I could help you more on your conditions but I just wanted to let you know that you are not alone out there!  Hang in there - the MedHelp community is wonderful on getting people through the toughest of things!

Utahmomma
papillary carcinoma '03
recurrence and RAI '06 and probably '08
three sisters with papillary carcinoma (the one with the worst case only 24-years old at diagnosis)
168348 tn?1379360675
COMMUNITY LEADER
Thanks Utah ................appreciate it!

Cheryl
168348 tn?1379360675
COMMUNITY LEADER
Here are the good basic articles that Shelly provided in the prior post:

http://www. emedicine.com/radio/topic433.  htm

http://www. emedicine.com/med/topic1413.  htm

http://www. emedicine.com/ped/topic1394.  htm

Just make sure you take out the added spaces .. the system automatically deletes websites but these are valuable info for you and are ok to post!

Cheryl
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