Medullary Sponge Kidney Disease (MSK) Community
MSK?Please help... I am scared and tired of feeling miserable
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MSK?Please help... I am scared and tired of feeling miserable

The first time I ever heard of MSK was today in my urologist's office. He actually didn't tell me the name of MSK but described what he thinks could be wrong with me and after a miserable night of pain I got online to see what I can learn and came across the name. I am confused and scared but mostly so tired of feeling awful.

I have had a history of kidney stones... at least 60 in the last 6 years without any doctor being able to find a cause for them. I have chronic pain even when the doctors say my kidneys shouldn't hurt. Many times I've gone to the doctor complaining of kidney pain and they do tests that reveal stones in the kidneys but they say I shouldn't be in pain because the stones are in the kidneys instead of the ureter tubes and send me home. Well regardless of whether its SUPPOSED to hurt or not - it hurts!

With the pain comes an unbearable exhaustion. I say that I feel like I've been hit by a truck. Sometimes I just cry because its all I can do and I feel so worthless. I own a business and its so hard to run it when I have such a difficult time making plans - I can be fine one minute and in immense pain the next.

I also have a lot of GI issues that I deal with and I don't know if the pain and diarrhea is caused by the stones or what is going on. I just know that it is excruciating at times and I feel so hopeless.

I had an ultrasound in December that showed bilateral 'cysts' in my kidneys and stones in both as well. After that they did x-rays and then an IV dye ct scan. Now that the dr. thinks I have MSK he is having me do the IVP. I am nervous about drinking the citrate solution and I'm nervous about the test and the diagnosis. Do my symptoms sound similar at all to yours? Is there anything you can offer me to make me feel a little less apprehensive about the test and disease? Any help is greatly appreciated!
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489228_tn?1291535054
HI, and you are not alone.  We have all or many of us have been right were you are.  It is scary and very alone. Most doctors do not understand are pain issues, and the reasons are not taught in medical school.  Together we have found answers and solutions, oh yeah and yes, your symptoms fit, your not alone and YOUR PAIN IS REAL!! EVEN WHEN NO STONE SHOWS IN THE URETER OR NO INFECTION SHOWS ON  STANDARD UA TESTING! Please read through the many articles and posts etc. here and in the healthpages on this site. Then send me a pm and I will send you some more articles etc. to help as well, but I need an e-mail address. That can not be posted openly.  

One thing that has helped many of us is for many reasons our VIT d levels can run very low in us and treating this helps A LOT with the energy levels etc. It is very important to have it tested though not just assume since too much D increases stones too!!  It has to be monitored and treated at the right level.

Please keep in touch and I hope we can get you some help!
hang in there
Shelly

Shelly
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I've been Dx with MSK for 7 years. I have seen multiple Drs and numerous hospitalizations. I am now seeing a new neuphrologist who has helped me to understand so much more. She understands the pain and what I have been going through. She is very concerned with the long term damage the stones have caused. I am now on new medicine that hopefully will help. I also saw my pcp who has put me on long term pain meds to see if it will help. I am a nurse during the day and now have turned into a patient that I always dreaded about. I am very optimistic though. Hoping this will help. As long as I can stay out of the hospital for 6 months. You are not alone. We all know how it feels to feel the way you do. Keep your head up.
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You are not alone and all those symptoms and feelings you are having are all too real to me. I was recently too diagnosed with MSK and treated like a drug addict at the hospital many times and my mother came with me and she is a nurse and she was appauled!

I have many stones and infections now for 7 years and I was told the same thing. You shouldn't have pain. Go home and one Dr. even told me I was clinically depressed!!! He said I was creating my own pain and fatigue.

I know how it feels at work, I am a school teacher and after work I also explain to my friends and family the same exact way... That I feel like I got hit by a truck... and the pain can just hit instantly.

I'm 33 and have been dealing with this for years without an answer until recently. I had an amazing nuerologist who never gave up on me after the Uros sent me to nuero. He managed and still manages my pain, he is the one who led me to the right sources and outlets, he researched for me and found me my answer and I thank God for him.

He referred me to a Nephro who ran the right tests and I also have cysts and stones some 7mm and both kidneys and fluttered with stones....I didn't like his: This is what you have so deal approach so I started to research. The med help community by far has the best resources for MSK'ers and SHELLY is the best and knows sooo much!


Get the IVP so you can really find a good urologist and nephrologist as well, there are many ways to manage the pain. Pain managment for me is a must. U are NOT alone. I feel that way as well and I finally found good renowned md's very well versed on MSK out of Colombia Presb Hospital in NYC, I am aiming to have a procedure that is the one Dr. Wolf does in Michiagn. Shelly has that post-atricle up.

Try and keep your spirits up and enjoy things day by day. In my case getting angered and depressed seems to make it worse for me. I feel like isolating myself all the time because of the pain, but speaking from experience you are pushing those that love you away because you are angry and in real pain. I don't know your exact situation and don't know where you are located but I would be willing to chat-talk... Help you locate good md's... Whatever it takes. This site has given me hope. Dont give up and fight for yourself!!!!

May this message find everyone well!!!! Please feel free to PM me.

Jeanette xoxo
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168348_tn?1379360675
Hi,

It's a scary word to hear -- especially when most are clueless.  I learned so much in this community .. the health pages have great links and the members are wonderful.  I hope in the years to come, more is available for a cure -

C~
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