Medullary Sponge Kidney Disease (MSK) Community
disbelief
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

disbelief

I was brought to tears when I found this page while I was Googling about msk. I unfortunately have to search the internet for answers and information about my condition because my nephrologist, urologist, or primary know anything about it. All they say is " this just means your more probes to kidney stones here's some pain medicine." I felt like I was the only one who had to deal with daily pain even when all my tests for stones and infections come back "normal." I have had kidneys tones and infections since I was about 5 or 6 but not until I turned 17 did it start to get really bad and it took them 3 years after that to figure out I had MSK. The urologist walked in and said "you have what is called medularry sponge kidney it means you will always have kidney stones. Here is a script for pain medicine so you don't have to go to the ER all the time." Then she walked out of the room. I was in shock when I went online and read that it means way more than being "more prone to have kidney stones." It has been 4 years since my diagnosis and I have had well over 50 stones and numerous infections that have even hospitalized me but my doctors all still say that same phrase that has become like nails on a chalk board. I would love to be able to find some people on here to be able to go to for support. I would greatly appreciate having someone who actually understands what this does and how it feels when no one will listen. Someone who understands the daily pain we with MSK go through. I would also love any tips on how to manage this stupid disease better.  At this point in my life, I should be like every other 24 year old but I'm not but I will try anything to be given the chance to be.
9 Comments Post a Comment
Blank
Avatar_f_tn
hi,ive just read your post and im so sorry i cant give u any answers,i truely am..i wish i could..,but i just wanted to post to say hi,and wanted you to know that your not alone,and that people are listening and you will find answers...promise..with best wishes
Blank
Avatar_f_tn
Thank you very much just knowing that someone understands and that I'm not alone means a great deal. I was at a point this week where I was starting to think it was all in my head after all these years of fighting for even the smallest answers. This has reinforced my hope.
Blank
Avatar_f_tn
no probs hun..dont give up..try other forums and posts..promise u..u will get so much support and that leads to the answers your looking for..people on here are searching for there own answers too..keep posting..and dont give up....with best of wishes xx
Blank
Avatar_f_tn
Hi I have the same thing as you and am also a young adult. I just found out earlier this year I have medullary sponge kidney that they think has turned into nephrocalcinosis :/ I am really looking for people with this so we can help and support each other :)
Blank
Avatar_f_tn
Hey. I too have msk. Andddd I'm also a 24 yr old female...Im so sorry to hear how badly you're struggling with it...I did as well for many years. Besides high doses of opiates...I found a few things that help immensely! 1) I went totally vegetarian and found this to - after only a year - help me greatly...less stones/ZERO infections and less pressure in the mornings. 2) hot bikram yoga....I don't know if u have this in ur area but it helped me huuuuugely!! 3) forcing myself to drink atleeeeeast 70oz of water a day...4) stretching out my back and hips every morning to prevent the muscle pain that is present from putting myself in weird positions to compensate for my kidney pain/pressure 5)using my shiatsu chair massager...my parents got this for me on black Friday last year on deep sale. Its one of the legit ones and it works amaaaazingly when I have that really weird muscle pain from holding myself in weird positions. Aaaalso 6) hot bath soaks (hydro-therapy) with epsom/sea salts daily to relax and detoxify the body definitely help...also...pain killer-wise ..it took my doctor and I yeeeears to find the perfect combination and dowager of pain medicine that actually helped and gave me some relief. Daily (or moreover-when I'm in pain) I use a 50mcg/hr fentanyl transdermal patch and take 10/325mg oxycodone (generic perkocet) for break through pain. As of lately itself like my msk has been muuuuccchhhh more controlled and manageable. I hope you one day soon also find your perfect balance and regimen! Im sotry that this post is a bit half-assed but I'm typing it on a kindle fire...lolol

I have never actually posted on anything like this so I more then likely wont be checking back..but if u or anyone wants to contact me to talk / trade stories / or for my ENTIRE regimen to control my msk....feel free to email me at ***@****. with the subject header MSK FORUM..NOT SPAM!!!!    Anyway...goodluck with everything my dear!
Blank
Avatar_f_tn
Hey. I too have msk. Andddd I'm also a 24 yr old female...Im so sorry to hear how badly you're struggling with it...I did as well for many years. Besides high doses of opiates...I found a few things that help immensely! 1) I went totally vegetarian and found this to - after only a year - help me greatly...less stones/ZERO infections and less pressure in the mornings. 2) hot bikram yoga....I don't know if u have this in ur area but it helped me huuuuugely!! 3) forcing myself to drink atleeeeeast 70oz of water a day...4) stretching out my back and hips every morning to prevent the muscle pain that is present from putting myself in weird positions to compensate for my kidney pain/pressure 5)using my shiatsu chair massager...my parents got this for me on black Friday last year on deep sale. Its one of the legit ones and it works amaaaazingly when I have that really weird muscle pain from holding myself in weird positions. Aaaalso 6) hot bath soaks (hydro-therapy) with epsom/sea salts daily to relax and detoxify the body definitely help...also...pain killer-wise ..it took my doctor and I yeeeears to find the perfect combination and dowager of pain medicine that actually helped and gave me some relief. Daily (or moreover-when I'm in pain) I use a 50mcg/hr fentanyl transdermal patch and take 10/325mg oxycodone (generic perkocet) for break through pain. As of lately itself like my msk has been muuuuccchhhh more controlled and manageable. I hope you one day soon also find your perfect balance and regimen! Im sotry that this post is a bit half-assed but I'm typing it on a kindle fire...lolol

I have never actually posted on anything like this so I more then likely wont be checking back..but if u or anyone wants to contact me to talk / trade stories / or for my ENTIRE regimen to control my msk....feel free to email me at ***@****. with the subject header MSK FORUM..NOT SPAM!!!!    Anyway...goodluck with everything my dear!
Blank
Avatar_f_tn
Oh and by the way nickynmadismom - I too have medullary nephrocalsinosis...that just basically means kidney stones. They reaalllyyyy do suck so bad though! I wish u the best of luck with everything!! OHH! And another little tip!!when you're passing the stones...fill up a bath of warm/hot water...lay in it...and actually urinate into the bath...then obviously drain it and rinse yourself off....but the warm water helps to relax the urethrra and helps the stone pass more easily....also ask your doctor for prescription urestat (turns ur urine orange) that also helps a lot
Blank
1113762_tn?1266119076
I too have MSk...I was diagnosed in 2006 and honestly, it has been a struggle.  I haven't checked in on this board for a long time, sorry all.  There are a lot of us who have been around the block and have had to deal with the pain issues.  I know for me personally the Dr has me on fentenyl and Vicodin, along with trying to treat the neuropathy that develops in the kidneys themselves, so I am also on neurontin, amitriptyline and cymbalta.  (Sry, I know I spelt some of those wrong...but its a heavy med night).  My pain regimen includes liquid morphine concentrate...I only use that to try and prevent ER trips...more often than not, that actually works and I don't have to go.

This is a hard disease to have...sometimes I wish I had one that more people knew about..because, it is hard to explain.  Keep your chin up.  I can say that because I have to do the same myself....just understand that you are not alone...I was just on FB and I hopped across a page for MSK on there....it felt pretty good to know that maybe with having a page on there...more people will be aware of what we have to go though....I in the last 14 months, I have had to have 8 surgeries on my kidneys for stones and stone related problems....but, I am starting to feel better....then I peed a little stream of tiny sand an was reminded that no matter what...kinda like the postal service....through everything...I will make more stones....

There are a lot of familiar names on here that have been here for year (I took a really long break from posting) but, they are full of good support and will help you through.  YES, its great having a place that we belong and others understand.....good luck hun!
Blank
168348_tn?1379360675
Soooooooooooo glad you found us!

WELCOME~!

C~
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