Medullary Sponge Kidney Disease (MSK) Community
Other Options???
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Other Options???

Hi Everyone! I am new to the forum, and just want to first say that I have really enjoyed reading and learning from everyone here.

I am a 26 year old single mother of a 3 year old little boy. I was diagnosed with MSK when I was 18 and have been struggling ever since. I have had an exploratory surgery on my right kidney with a stent placement in 2001. I have also had a total of 5 ESWL surgeries done over the last 8 years (lithotripsy). 3 of which were on my left kidney and 2 for the right kidney. I have passed more stones than I can count, and care to remember. I have been under the care of a Urologist since I was diagnosed (it took me going through a total of 4 before I found one I liked and actually did something). He has referred me to 2 different nephrologists, both of which have told me there is nothing that they can do for me; they don't deal with kidney stones; and they don't even know why I was sent to them in the first place. My urologist is now at his wit's end with my case, and is frustrated because he doesn't know what else to do for me. But I really have no options but to continue seeing him. As I have said, he is the only Dr. that has actually taken me seriously and believed me. I have been to the ER hundreds of times, and every time have numerous stones in one or both of my kidneys. I have recently had to change hospitals because of being treated as though I am a drug seeker. I don't understand why the stupid ER doc's cant just look at my last xray and compare to the one they just did to see that obviously there are stones causing me pain, even though they may not be in the ureter. Dr. Narain (my urologist) also diagnosed me with having Renal Tubular Acidosis this past February. My stones are calcium oxalate, and after numerous blood and urine tests, concluded that I have too much oxalate and not enough citrate in my body to keep me from forming stones. I am in the process of cutting out all of my animal protein (easier said than done) and taking citrate supplements. He hopes this will help me, but is unsure. Everytime I see a new doctor and tell them I have MSK, they never have any idea what I am talking about.

I hurt on a daily basis. My side ache every day, and when I do pass a stone I cannot pee and am in excruciating pain. I try to take pain meds, but most of the time they do not work. So, then I am on my way for yet another X-Ray; which I have had so many of I am probably glowing inside. KUB, CT Scan (with and without dye) and IVP....I know them all. My doctor recently told me that I will probably need to seek out a pain specialist bc it has become a chronic condition and he is not comfortable managing it.

I am at the end of my rope. I am a single mother with no help from the father and I am trying to work a full time job with this condition. The last 6 months I have not been able to work a full week's of work, and am now struggling to pay our bills. I am in about $15,000 medical debt and I have great insurance! I am lucky to have an employer who understands my condition. I am wondering if there are any other options for me that anyone may know of. And if there are any other MSKers in my area that know of any good doctors I could try.

Thanks for listening....
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489228_tn?1291535054
Dear Summertime,
    Welcome!!  You have found the right place, you are among friends
here and also others who like you struggle with MSK!  Together we are also seeking and have found some solutions for dealing with the kidney pain and MSK!  

One of the biggest things that really is growing in acceptance is getting your Vit D levels checked. So far all but one of us with the pain and problems has been very low.  The one that was in the normal range though I now know was a low normal.  To my amazement research has been coming back to me that low Vit D has now also been associated with Interstitial Cystitis, pelvic pain in general Prostatitis, Fibromyalgia etc.  I personally had to ask my physicians to check my levels, I came back a 14 normal is 30-80, though they put me on a supplement, I went up to a 27, recently I began feeling bad again and it went back down to a 22.  The total explanation is a little complex, however they are finding that Vit D, is more important then they realized, effects muscles, mucus linings, as well as helps us fight off infection and help relieve pain.

So bottom line step one is to ask them to check your Vit D levels,
I believe it is called the Vit D 25OH

There are also some specific articles on MSK and pain in the health pages here:
http://www.medhelp.org/health_pages/Urology/What-To-do-For-the-Pain/show/577?cid=185

There is a lot of good info in the health pages as well, here is the link f for all them:

http://www.medhelp.org/posts/show/565929

I am also an IC support group leader, we have a menu item on our site for MSK as well.  http://www.moarkic.com/

For the link to a specific article that I wrote on MSK and Bofilm infections in 07'.  I am working on and have been for sometime a more in depth article with the many new ideas and research but for now this is what we have:

http://moarkic.com/content/view/68/56/

Below are some of my favorite MSK articles they should also be in our health pages, but just for reference they are here:

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

http://emedicine.medscape.com/article/242886-followup

AFTER YOU LOOK TROUGH ALL THE INFO AND EVEN OLD POST FEEL FREE TO SEND ME AN E-MAIL ADDRESS AND I WILL SEND YOU THE ARTICLE ON DR. WOLF'S PROCEDURE AND ACKNOWLEDGMENT OF OUR UNRECOGNIZED PAIN WITH MSK.

Again welcome and I hope this helps you!

Shelly
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Welcome to our Community!  MSKShelly has given you terrific advice.  I'm sure you'll enjoy our community, sorry you are in such pain :(

C~
MSK w/calcium oxalate stones
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Thanks for the welcome. I am located in the Nashville area and I seem to have trouble finding a doctor actually specializing in my condition. If anyone knows of someone I would greatly appreciate the info. Thanks Shelly for the articles and links.

Summer
MSK & RTA w/ calcium oxalate stones
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489228_tn?1291535054
I do not know of any docs really specializing in this, other then maybe Dr. Wolf in Michigan, Dr. Woo somewhere near Kentucky or Cincinnati, he is a nephrologist I have heard of and then Dr. Neal at Columbia MO/

I am willing however to help you have articles to take to your own docs if you need
just pm me your e-mail address!

Shelly
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I am 19, and was just recently diagnosed with MSK. I'm currently going through the same problem of finding a doctor who will do something. I'm sorry to hear about all of your troubles. I was wondering if you had any advice for me.  
You'll be in my prayers, again I hope all goes well for you.
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The reason you were sent to a Nephrologist is to find the reason for the stones and possibly a med that may help you. If you have true MSK you will forever need a Nephrologist. Has your parathyroid levels been checked? Have you done 24 hour urines? Have you had stones analyized?? Have you had an IVP??<<<< All duties of the Nephrologist.
I do not blame your Uro. for being at his wits end as you need a Nephrologist to help him find the answers. A Uro. is strictly a surgeon!! Someone who will remove your stones in a proper and correct manner. Very smart... compare x-rays if they are not doing it collect all your studies and keep them close on hand that is what I did and I have all mine going back to age 19. You will need theses now and in the future and many times hospitals dispose of them after a certain ammount of time. You are correct they need to keep count.
Again you are correct<<<<"glowing inside" I came down with colon cancer at age 39 due to sooooo many CT scans so please be careful. The rule is US, KUB, CT in that order try to stick with the US.
BEWARE OF THE LITHOTRIPOSYS as these will only worsen your condition as much dust and fragments are left behind that form new stones. You are doing well as I now notice you did in factt have an IVP.
OK there is a great doc at this forum and having no insurance HE WILL HELP YOU. He is a Nephroligist so gather your records as he will ask for you to mail them he is in NY. His name is David Goldfarb and the forum is
cystinuria forum
or just put
IFC in browser and you will find. It is a graet site for stone suffers and he will be happy to help you. Tell him I sent you my last name is Hartsgrove... Please join today you will be happy there and you will gain so much more knowledge. TC Cara  
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I see you do have ins. just explain your situation he will help you and he truly is a GREAT doc. Cara
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One more thing if possible try to get ur Vit D from the sun being outdoors as many have a hard time taking the Vit D. :) Cara
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Hi! Sorry I haven't been on the forum in so long. I have been having trouble again. Had to go back to the ER last week. Had a UTI, 2 stones in my bladder, 1 in my ureter and several more in my left kidney. This was after a couple days of pain. I just finished my antibiotic. However, the pain hasn't completely left. But, my hopes are high thanks to all of you and your support.

My Uro referred me to a nephrologist three times in the last three years. I have been to two different nephro's and they both have told me the same thing. That they do not deal with kidney stones, and send me back to my uro. Unfortunately, all the nephro's in my area belong to the same group and I have trouble getting into a new one. I have had every US, KUB, CT (with and without contrast), and IVP known to man. I have done several 24 hour unrine labs, the last of which resulted in my being deiagnosed with Renal Tubular Acidosis. I have had my stones analyzed several times over the last 9 years. My uro has now referred me to a pain specialist because he can no longer prescribe me pain meds, and cannot control my pain.

Thanks for all your advice. I am looking into the doctor you informed me about now. Let me know if you have any other advice for me. It is so greatly appreciated. I hope you are all doing well. You are all in my prayers!!

-Summer
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I do want to encourage you with the Vit D,

I am on Vit D supplements without any problems.  The  key is that Vit D naturally occurs in fish etc.  My pharmacist told me that taking a Vit D that is in a Fish oil base or taking the Vit D with fish oils helps it's absorption.  I followed his advice and am amazed at home much better I feel with my Vit D levels increased.  It is important though not to just take Vit D, since high levels of Vit D can increase stone production as well.  My doctors are greatly monitoring my levels and did not want to put me on the mega dose prescription types for that reason!

The sun is the safest method, however with MSK sometimes we have metabolic issues so may need a little extra help.  I also can not be out in the for any long periods because of some of the other meds I am on!  I am trying however to walk about 15-30 minutes 2x a day at least to get some safe exposure.  It can be hard to get out and exercise if you are in pain!

We are all different so what bothers one may not another so work with your doctor, even your GP can handle Vit D levels to find what works for you!

Good Luck and keep us posted on how you are doing.  I hope you are able to get into
the doctor she has mentioned and look forward to hearing the treatment options he has for you. I would love to see more options for us.

Shelly

Shelly
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