Medullary Sponge Kidney Disease (MSK) Community
vitamin d
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vitamin d

hi everyone, i have the best news to tell you all, you all know i was haveing so much joint pain ,i was so bad i could hardly walk up steps,go to the store anything, well the dr, check my vitamin d level !!guess what they were low!!very low,so the week of christmas he started on vitamin d 50,000 iu..well guess what.yesterday is the frist time in 3 years i woke up with no kidney pain!!!!i could not beleive it god ansered my prayers!!!yep!!i was so happy i call him and ask him if i could take a other early, he said yes.so last night i was reading looking why this has help me so much and i found out they use vitamin d too help with infections.well we all know i have biofilms in my stones.now i do still have join pain cause my bones are solf yet but i'm getting better,we all know i could pass a stone anytime and the pain back but as for min to min pain it not there!well, i look throught all my med. records not one dr. up till now has checked my vitamin d!!!!!!!!so i don't know if your dr.check your vitamin d or not ?but please if you have every day pain have it check.i also read vitamin d with pain meds too.i was so bad my pain med didn't work i could have taken all of them and still had pain really.i don't know how long this pain free time will last but for now ,i am going to enjoy it!!!cause we all know the stones can move on out at any time!! please let me know how many of you have had your d check.i'm so want to know!!! thank you love mskluv
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21 Comments Post a Comment
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168348_tn?1379360675
WOW WOW and WOW AGAIN!!!!

We see this on the thyroid community oftentimes, too .. Vit. D.  I will remember to mentino this to our MSKer's ... WOW!

How long have you had this undiagnosed pain now?

I've had mine checked by my Uro and my Endocrinologist for thyroid problems .. they did it with the original blood workup with the Uro 3 yrs ago and then again with a mineral check with the endo.

C~
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691983_tn?1266808432
day 4 wow in kidney pain when i woke up!!!!i never had my vitamin d check till a few weeks ago. my full time pain started 3 years ago. it would take 2 hours in the morning to get my pain down to a 6 . and a 5  on the pain scale it the best i would get!!!really no lie.now yesterday i try not taking pain meds and it started but i took them and it when away.i tryed not to take my anibiotics too but i started a fever. so i know at lest my meds are working better with the vitamin d!!! my bones are still solf so i still have bone pain. but really i';m feeling great. 2 weeks ago i didn't think i would be around for a other year. so thank god for the rhuematologist!!!! i think in a month or so i be back to my good old self!!! GOD BLESS!!
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587521_tn?1238508522
I started taking vit D for my seasonal affective disorder symptoms about 3 weeks ago.  I haven't noticed any change yet, but I'm hoping it will help a little.  I live in Denver, and we don't have too many gray days in the winter.  But when the weather is chilly if the sky is gray I feel like crawling under a rock and have to FIGHT to just go to work.

Anyway, my question to you is ... have you noticed any change in your joint pain at all?  Or is the pain reduction only in your kidneys.  Since my surgery, my kidney pain is almost 0, but my left elbow has really been bothering me.  If it is helping with your joint pain as well, maybe I should go have my levels checked.

Becky
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691983_tn?1266808432
did you every have yours check???my joint pain was so bad that i could barely walk.they thought i had lupus. .i look through all my med records and no one every chek my d levels ever!!till i when to the rhuematolgist.now my joint pain is better but i still hurt cause my bones are solf .i'm on a really high dose !! 50,000 iu's. one pill a week .it from the dr. i don't think you can buy it that strong.now the dr. wants me to go to threapy to to get strong. i been sick for a long time. i really think this is helping with my infected stones.and that why my kidney pain much less.or my meds are working now. pain meds do not work when your vitamin d low!! what dos of vitamin d are you on???i also read that you can get lots of stones from low d because the d and caluium bind togather to go to the bones and when it's low it stays in the kidneys and makes stones.i read that rta also you have low d and low potassium . my potassium is very low i take that too.i really would like to know how many msk people have low vitamin d !!!! so let me know how many have had theirs  check??time will tell with the day to day kidney pain. even though i pass stones like weekly and thats ton of pain. ok have a great day god bless
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707438_tn?1240963240
thanx for the good info im going to check with my urologist when i see him next month to see what my levels are and if he thinks this might help me too thankyou again for the useful info
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489228_tn?1291535054
I had my URO order a blood test of my Vit D on Tuesday.  I am anxious to get the results back.
Shelly
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489228_tn?1291535054
I had my URO order my Vit D tested, and in our conversation I remember reading how it effects the hypercalciuria, which is a big word meaning that our bodies put the calcium in the urine and not the bones etc.  I have already tested positive for this, but which type was never established.

I came home and looked up the article listed here
http://emedicine. medscape.com/article/436343-overview

Cheryl, hopefully you can get this and it won't be deleted...I separated the sections so this will post.   Take out the space between emedicine and medscape, the copy and paste in into your browser.

Anyway, I also wrote to Dr. Wolf since the article confused me..You see one type of this causes some MSK patients to have too high of Vit. D levels.  In his response to me he explained that both too low or too high levels of
Vit. D can cause problems.  The morale of the story being, do NOT just go out and start taking Vit D, make sure you ask your doctor to test your levels first!!  Vit D can be very significant in the treatment of our pain and stones but we are each very individual in what we need!

I am anxious to learn where my levels are!

Shelly
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592774_tn?1325397342
I have "roaming" joint pain. Sometimes my shoulder, then my knee, then my elbow, then the outside edge of my foot, or my big toe.It will stay in the joint for a few weeks, then clear up. I was told it was a form of gout. It is not always in the big toe. Mostly my knee or shoulder though.
How is your uric acid level?
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587521_tn?1238508522
This may sound crazy, but my current URO hasn't ever tested any of my levels.  He is mainly concerned with my stones and the pain associated with them.  I have never had a URO that cared one single bit about my MSK.  This is probably because I only bring my stone/pain issues to them.  I don't seem to have any other symptoms, except for the occasional kidney infection.  Everytime I go into to get tested for an infection they come back negative, therefore I go to my GP and he just gives me the antibiotics.

To get tested for this stuff, do I have to do one of those terrible 24-hour urine things?  Man I hate those things!
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168348_tn?1379360675
OH boy... I'm sort of beside myself .. the results came back.  Vit D is VERY low.  He wants me to take a scripted Vit D pill for 10 weeks and come back to readress how I'm doing.  So between my thyroid and the MSK this is all new to me.

Also have a UTI with the same organism as last time .. so more Cipro on the higher level dosage and come back for repeate culture.  Urinalysis was negative and culture positive.  I think I've had this thing for some time now and it cultured clera the last time but was there .. is this new .. no!

C~
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691983_tn?1266808432
boy i can't wait to see how if vitamin d helps you.. it has help me so much very much. i had no pain relief no matter how stong my pain meds where.really now i'm almost back to my self .the pain meds are working and i have no kidney pain yeah. but it took 100,000 iu's of d first till i felt better. i found tons of info vitamin d how it helps kill infections too. and how pain meds don't work when it's low.i will find you the web site and send it to you. i so glad you had it check!!!do you have bone pain too?????
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168348_tn?1379360675
No real bone pain but lower back and the ongoing ankle pain with my severe tendon problem that maybe will get better with the added Vit D.  I am on Mobic which is NSAID daily 15mgs ... hmmmmm wonder if that has anythign to do with it?

thanks on the aritcle
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489228_tn?1291535054
Unfortunately, I just don't think many URO's really know about the Vit D connection,
maybe because the research on it has come out in the last few years, as has, a lot of what were talking about so most doctor did not learn in in medical school. We do need to give the doctors that understanding and not just expect them to know.

  I know my URO is great but he had to bring in a book that he and the nurse had looked up to know what Vit D test to order. Thankfully I brought a research paper sent to .... that had the test needed listed He order theVit D (25 something.., from the lab of others it is a 25 OH).  It only was a standard blood draw.   Actually they did a regular blood test, since my creatine was high post op and my GP wanted it retested. My GP basically said if the URO doesn't order it on your next visit call me I WANT IT RETESTED!

SInce my URO seemed so unfamiliar with the Vit D connection yet, I had remembered that Vit D can be associated with they hypercalciuria, I came home and looked up the above article.  I was surprised to see that it said Vit D, being high was often connected with one type of hypercalciuria, this type is more common in MSK. I was also surprised to see, Dr. Wolf listed on the paper, so since he did my surgery this summer I was able to contact him and ask him to explain it to me.  Again like potassium high or low can cause problems SO ASK YOUR DOCTOR TO ORDER THE TEST!

The researcher that I have had helped me so much over the years gave me the link below:(again take out the spaces and * so it will post here.) This is a gov, listing of some amazing plain and simple articles about many diseases and conditions.  There is an excellent article in there on MSK too. These are not copyrighted and can be copied as needed for patient education.  I was amazed to find that in the MSK article,
it specifically said that 1.the small cysts keep the urine from flowing freely in MSK, which is what increase our stones and INFECTION.  2.  Secondly under UTI pg.3, it stated A PERSON WITH MSK MAY NEED TO CONTINUE TAKING A LOW-DOSE ANTIBIOTIC TO ROREVENT RECURRENT INFECTIONS.

Cheryl, and those of you who do not currently live with the chronic infection/pain etc. issues, this is really important because they can put you on low dose antibiotics designed for the urinary tract like macrodantin etc.that are not as hard on your body, so you do not wind up like some of us out here.  You can also consider at least getting on a regiment of natural antibiotics!!  Silverbiotics, garlic, if you can tolerate it cranberry if not, the D-Mannose etc.  Of course all of these things should be discussed with your doctor but take the article put out by the  US Health Dept. with you!

http://  *kidney.niddk.nih.gov/*

ALSO, I THERE JUST SEEMS TO BE SO LITTLE RESEARCH TO PUT ALL THE MSK INFORMATION TOGETHER,,, PLEASE PRAY FOR ME, I HAVE A NEW ARTICLE ALMOST FINISHED THAT SOME HIGHER UP IN THE RESEARCH REALM
ARE WILLING TO REVIEW BEFORE I RELEASE IT..., PRAY THAT DOORS OPEN AND IT LEADS TO THE RESEARCH AND ATTENTION WE NEED!!

By the way once finished I plan to put the article here and on my website.  This is not something I am trying to sell,...., only wanting to get the word out. IF by some amazing open door I find a national publication that is willing to publish it, I might go that way first to get us attention.  BUT my heart and the whole goal is to get this research and information in your hands so you all can take to your doctors to get help!!

Shelly

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489228_tn?1291535054
sorry, left out they did a standard blood test along with it and just took a separate vial for the Vit D test.. not fasting no nothing special except it is a send out test so does take a little while to get back.
Me again
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592774_tn?1325397342
Your uric acid levels can be tested in your blood. Some stones are uric acid so your uro should be testing those levels. I never was tested for Vit. D but I go to my Nephro Thursday and will ask her.
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489228_tn?1291535054
Nancy,
    There are some good research links that I and others have found on the Vit D, information, would you like some of that sent to you for your webpage?

I have ask MSKluv to get me some of the good ones too, I will pass them onto you if you want them as well!

You've been on the quiet side, HOw are you doing??

Shelly
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168348_tn?1379360675
If you want to compile all the links together I'll throw them into the Health Pages under Vit D and we can continue to add to the list for future members!

Uric acid is a serum test, but my endo said the 24hr urine study is more accurate but they did mine via serum for convenience this time.

C~
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587521_tn?1238508522
What is a "serum test"?
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592774_tn?1325397342
Well, my nephro appointment went well. She is ordering my vit. D level. She told me if I did not have  Chronic kidney failure, insurance would not pay, but since I now am in stage 3, they will pay for a Vit. D level.
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691983_tn?1266808432
boy, can't wait to see what your level's are.i am so much better 5 weeks on vitamin d now!!!!! i can't beleive a vitamin made me feel so great.that's why they call it the sunshine pill.it brings the sunshine back into your life!!!
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489228_tn?1291535054
Did you all notice that Cheryl added the Vitamin D info MSKluv sent to the health pages.
I don't go to my URO till Feb.11   grrr... I am interested in knowing what my levels are as well!....

   keep us posted,,, we need to keep checking in here to see where each of us tests out!

Shelly

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