Medullary Sponge Kidney Disease (MSK) Community
WELCOME to the MSK Community!
About This Community:

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

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WELCOME to the MSK Community!<img src='/RoR/images/blank.png' class='icon_img_ww push_pin_icon'>

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The MSK Community is comprised of women and men from all different ages, who have MSK or have a loved one or friend with MSK.  We are an extremely supportive, tight-knit family of people whose common goal is to learn about MSK, deal with our health issues as it relates to MSK and help others.

Here are a few suggestions for making the most of your visits:

1) Be sure to check out the "Health Pages." The link is in the upper right hand corner of your screen. “Health Pages” address topics relevant to MSK such as FAQ's, etc.  

2) Please JOIN the community & you'll receive DAILY UPDATES of the MSK Community's Activity!  But, be sure you go to

-   My Medhelp
-   Account Settings
-   Preferences & click on the e-mail option to receive updates.

Another way is to "WATCH THIS FORUM" which you click on located on upper right hand side of the Community's page.  You can also WATCH A DISCUSSION by clicking on "Watch This Discussion" located on the upper right hand of the Community page when you are looking at a thread.  Watchlisted & Community Posts will be sent to your e-mail.

Once you have had a chance to look around, why not create a profile and tell us a little about yourself? Your profile can be as simple or as complex as you like. In any event, you will meet people from around the globe! You will have the opportunity to learn from others who share your concerns.

3) Consider posting on a current thread or starting one of your own. Don’t worry - you’ll get the hang of it very quickly. You’ll find that you will want to come back often to check up on your new friends. If you’ve got something on your mind, please don’t be shy. There are no dumb questions and we are all here to learn.

4) Get acquainted with other members. There are several ways to “Add a Friend” but one of the easiest is to scroll over the member’s name and click on “Add a Friend”.

5) Consider keeping a journal. Your journal can be private, public, or available only to those people you have added as a friend. Journals are a great way to share your story, frustrations, experiences, history, etc. You will probably find there are others who can relate to your story.

6) Want to speak privately to another member? Send a private message (PM) by scrolling over the member’s name and clicking on “Send Message”.

7) Only have a minute and want to welcome a member, or send good luck wishes? Scroll over the member’s name and click on “Send a Note.” Unlike PMs, everyone can view “Notes”.

8) Once you’ve created a profile, click on “My MedHelp” (indicated by a little red heart at the top of your screen). Check out the many great features: settings, kidney, water consumption, mood and PAIN Ttrackers, notes, message, photos. We have a wonderful pain and Kidney Tracker!!

To obtain a tracker:

Go to My MedHelp
Go to the Tracker Panel
Go to the end of the Tracker Panel and hit "Add a Tracker"
Then add one such as the Pain Tracker, or Kidney Tracker, etc.


We are so glad you are here! We would love to have you join our community! Pull up a chair, get comfortable and get ready to meet a great bunch of people!  People JUST LIKE YOU .. and remember TOGETHER WE CAN MAKE A DIFFERENCE!!!

We invite our current members to welcome our new members! Leave a little message of welcome and a little information about how this forum and community has helped you through your journey...

MSK Community Leader
Ngio64
Related Discussions
10 Comments Post a Comment
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707438_tn?1240963240
I WOULD JUST LIKE TO SAY THANK YOU TO ALL OF YOU THAT HAVE TAKEN THE TIME TO COMMENT ON MY JOURNAL POST. WITHOUT ALL OF YOU I DONT KNOW HOW I WOULD HAVE MADE IT THROUGH THE LAST WEEK. I AM SO GLAD THAT I STUMBLED ONTO THIS COMMUNITY IT HAS BEEN THE BEST THING THAT HAS HAPPENED TO ME IN A LONG,LONG TIME. SO THANK YOU TO THOSE OF YOU THAT HAVE REACHED OUT TO ME AND TAKEN THE TIME OUT OF YOUR LIVES TO GIVE ME YOUR SUPPORT, AGAIN YOU ARE MY ANGELS THAT I WISHED FOR. THANK YOU SO MUCH! I LOVE YOU ALL. I HOPE I CAN GIVE BACK TO YOU WHAT YOU HAVE GIVEN TO ME. THANK YOU
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489228_tn?1291535054
Again, I just very much hope and pray the information you have received will help you get the help you need!  If your uro wants any more info please let us know!

Shelly
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I was dia with msk 5 yrs ago and need to know what type of surgery helped . Im in so much pain all the time and there are no Dr.s here that are willing to do anything about it . They tell me just to suck it up and take teylenol and that doesnt do anything. I have 4 kids and they are having to grow up without me and I feel like such a desappointment.                               Jen
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I just happended on to this sight,I have MSK's ,was diagnosed eleven years ago,and never realized there are so many oof us out there.When I first was told it seemed as if they new very little about it,and after reading some of these comments they are still not sure why the pain is so bad,I know how you feel Jen1112 I was told I shouldnt have pain as well..Find another dr that takes you seriously,I have four sons and it killed me not to be able to play the sports with them like I could before this..Just dont give up,and look for a dr that will help and send you to pain management
Trishd63
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for some reason my other name.. failed log in 1000x.. so I'll try to be back in discussion soon =) Amie
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1095645_tn?1257446646
I know what you are saying. I was told I shouldn't have any pain either, but I have it constantly. I have two kids and I feel like I am not being a good enough mom because I am sick all of the time. I was diagnosed 4 yrs ago with MSK, but had issues with stones since 1997. I do have a kidney Dr and a urologist, but they aren't doing anything, but basically telling me to take Tylenol and sodium bicarbonate. I was refered to the pain clinic, but ours said they don't know how to treat it...so here I am right back where I started. I was told I have calcification's and stones embedded as well as having mass amounts of stones in the kidney. I was told my kidney is leaking and that there is protein in my urine. I just don't know what to do. I am tired of hurting and feeling sick, and tired of the uti's constantly. I did have a procedure done that stretched the ureter to help the stones pass easier, but that only worked for about 2 yrs.
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1095645_tn?1257446646
I am so glad that I stumbled across this site. I don't feel so alone and overwhelmed now. So many times I've been looked at as if I were crazy when I say I hurt, and it is very frustrating. Whether it be at the ER or even by my kidney Dr and Urologist. My urologist told me my pain was just the muscles in the back around the kidney and to take some tylenol. Tylenol does nothing I'm sorry to say! I just wish they could take the kidney and be done with it, but they won't because it still functions somewhat. I basically sleep all day, go get my kids, and spent time with them as best I can, and am back in bed by 9 p.m. It's a chore just to stay up. I want to be able to enjoy my kids and my my life, but it's just so hard to do. It takes everything I have, but I do the best I can each and everyday. It's very depressing!
I do want to thank Shelly for the great info, I really appreciated it!!
Kristi
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Hi all.

I have been diagnosed with MSK symptoms and inherited this disease.  I have been in the hospital on so many occasions with kidney infections, kidney stones and chronic pain.  I lost so many jobs regarding this disease and wanted to know if anyone ever filed for disability or can I file for disability because I have been unable to keep a job regarding my issue.  Can someone please assist me regarding if I am able to do so not.  I'm so glad I stumbled onto this site and I'm wondering why this disease is not being considered as a disability.
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1113762_tn?1266119076
Thank you all for being here...I just found this page and it is so nice to know that there are people like me out there...I have been dealing with this for 4 years now....I am so frustrated...thank you all for your input...if nothing more, it is nice to know that there are people like me out there...
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1505873_tn?1289727703
thankyou for letting me know I'm not alone. I've been so upset. For me not understanding is the worst.  






















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