Medullary Sponge Kidney Disease (MSK) Community
help no one will tell me anything
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help no one will tell me anything

hi i am 25 and was told just over three years ago now that i have msk and was told nothing more just that, that was the cause of all my utis while i was pregnant.now about three months ago i went to the hospital again for pain in my kidneys and was told i had kidney stones and have had them ever since and when i dont my kidneys still hurt and i feel nauseated i went back to my doctor again and asked how often i can get them and all she said was often and sent me for a ct.now all the information ive gotten about msk has been from the internet and to be honest has not made me feel hopeful about any of this just more depresses i have to daughter and all i can think about is how do i get over this pain to be there with them and not stuck in bed. please help i need to know if there is some hope to get through this
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489228_tn?1291535054
There is a lot of important information on this site that you will find anywhere else.  I have talked to 100's of patients around the world.  There are some great articles in the health pages and read through the previous posts.  You are not alone in your pain and at least we have found treatment options.  If you live in the US,  I can call and talk to you to save time etc. other wise send me a private message with your e-mail address and I will send you some information that might help you find some answers and help!

Shelly
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Unlike the previous poster who basically gave you no answers, like many people who are afraid to give advice these days, I'm not afraid. Sorry, but I've become very tired of legally safe or politically correct CYA answers. It leaves people with no help.

Doctors are lax or seeming apathetic a lot of times in their diagnosis reporting (about anything) because usually to them its not a big concern to be worried about, but there are other reasons doctor's are like this: seen too much of it, its become too routine, people's insurance isn't great, etc..

Anyway, I have had MSK since birth and was diagnosed with is some 10 years or so ago (I'm 34). I was told some people's lives are affected by it while other's live normal lives as if they have a normal kidney(s). I've been lucky and I have not had much trouble or pain from it at all.

The reason some are affected and others live normally is due to the "physical formation" of the kidney to bladder streams/canals (called ureters I think) and the number of them that exist. We're only supposed to have (so says the arrogance of man) 1 emptying canal (if you will) from the kidney to bladder. When I saw the xray of my kidney, I figured: "Hey, I'm an evolved human being. This is the next step of kidney to bladder canal formation. ha ha.", but the doctor's say that the more canals you have to the bladder the more chances you have of stuff getting caught in the openings that empty from your kidney to your bladder, more chances of stones forming, UTI's, etc.. I still feel as though having more canals to the bladder is a good thing, but I guess I could be wrong. Like in a gas tank of a car, if its always full the fuel pump doesn't erode nearly as fast, but if the level of fuel inside goes up and down a lot from empty to full then corrosion/stuff starts to build up inside.

So, assuming your UTI's are caused by your MSK (which they may not be and you should consider that if you are taking a lot of bubble baths, types of soaps you use, etc.. have to consider everything you put on your body in that area) your goal is to keep your kidney's clean and purged as often as possible from drinking good stuff.

How MSK was discovered in me was I had a stone(s) from taking too much vitamin C when I was going through a workout phase. Apparently you can even get too much of Vit C, as it seems you can get too much of anything in this world and that usually is bad. Life lived in balance is key. Look at things you consume that you excess in and consider if your "normal" food/water intake could be "excessive".

Since I was diagnosed with it I stopped taking vitamin c for a long period and switched my lifestyle to drinking 80 to 90% water on any given day and I have come to like water like candy. I can't get enough of it. I have also focused on drinking cranberry juice quite often and this has replaced much of my soda/coke drinking, though I never really did excess in drinking soda beverages, but now I drink less of it and treat a coke or a root beer as a luxury/privilege which is better for diet anyway since they are basically flavored sugar water.

Saw palmetto extract (not the berries) has helped a great deal as well. I notice a difference in urination behavior (better) when I take 320mg of it or more a day.

There is also a product called Urinozinc that I have found has helped my urinary system too.

Blueberry juice is also good, but harder to find. Some say its better than cranberry. Ensure when you buy cranberry juice or blueberry juice that you are getting the "concentrate" real fruit juice and not a "juice blend". At wal-mart these two are very hard to tell the difference from and you have to turn the bottle around and read the fine print at the top of the label.

While most people respond the same way to treatments, everything I've advised/recommended is to be taken into consideration with your own condition and the nature/make-up of your stones (if you have any with your UTI's). Think about it hard and even talk to your doctor if you have questions about doing anything I'm suggesting, but most importantly don't excess in anything (the juices I mentioned, saw palmetto, etc..). Find a balance that works for you.

If you only have UTI's I'd stick to the regimen I've recommended and also look into the health effects or side effects of "women taking saw palmetto". I think its ok for a woman to take it, but there may be some reading to do on it. Read up on Urinozinc also before taking it.

Hope that helps.
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489228_tn?1291535054
Searcherr
  I apologize that you feel I gave no answers, what you do no know is I have spent many hours speaking and corresponding with individual MSKer's around the world hundreds.  BELIEVE ME MY ANSWER ARE NOT POLITICALLY CORRECT.  However  Medhelp will not allow us to post direct links to outside info. to protect people on the boards. Therefor each and every patient I correspond with is given those links in
a pm or can e-mail directly, if they contact me. Many of these articles are full text articles we should have to pay for but have been provided to me, often by the research themselves to put in the hand of patients ONLY for the purpose of getting help!

If you live in the US I will also call you personally to share the  treatment options we have found helpful. I have written a 13 page research article on this very issue, that another patient is trying to help me get in the hands of someone who might help us get is published.  My goal is to get research dollars alloted for MSK research and also to get the truth into the hands of the doctors treating us so we can get help.  REAL HELP-not pat answers which is all I got when I first started my search.

Here is one of those articles on pain... I hope to update more once my life resettles!

http://www.medhelp.org/health_pages/Urology/What-To-do-For-the-Pain/show/577?cid=185
There are many research articles I have found that explain the reason MSK can
cause our chronic UTI'S that may or may not show on standard tests.

   There are many pieces to this puzzle and each of us is individual so it is important
to put the info into peoples hand so they can find the pieces that work for them with their doctor and give them the research to try to get their doctors to listen.  There are many natural options for treating and preventing UTI's.  I have an article within info on those in the healthpages too.

I and many MSKer's that contact me are or later also become diagnosed with Interstitial Cystitis too.  For us cranberry is one of the top flare triggers!  I personally recommend for anyone with ANY bladder symptoms as well as frequency, D-Mannose.  This is the sugars in cranberry and blueberry without the acidity.

Saw Palmetto is OK too and their are many others. I recommend them first before taking other steps to control pain,

I personally am going through a difficult divorce and can not type the same things over and over on this board therefor  we have put the articles in the healthpages as well to assist those of us with chronic pain and MSK that no one else seems to care about.  This does not mean I don't care instead helping MSK and IC patients is my life work, I am just trying to survive right now.  I am disabled from a combination of MSK , a chronic kidney infection and my IC, my case is a little extreme. I applied for SSI and finally at least got that but I am getting no child support etc and I do not profit from the work and time I put in to help patients in anyway other then the wonderful friendships I have made.

If searcherr you would like more in depth help, links etc.feel free to  ALSO to contact me directly.  I know how frustrating and difficult it is to live with chronic unexplained pain
when no one around you seems to believe you or understand.

However please don't judge someone by one post or without knowing the whole picture!  We are in this thing together and that is what this board is all about, helping one another up, not knocking each other down.  I do not claim to have all the answers by any means instead, I believe that it is only TOGETHER we can make a difference for MSKer's now and in the generations to come!

Shelly

Shelly
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hi lady
             i appreciate the help any information i get from u guys is a hell of a lot better then the doctors.so far ive had my thyroid and vit d levels checked and those are fine i was put on cipro and it has helped with the kidney pain a little.im just confused and frustrated about whats going on i have had NO uti since i was pregnant over 3 years ago.this all started a couplle of months ago when i got my first kidney stone and my kidneys have not stopped hurting since my doctor tells me i have a few kidney stones IN my kidneys so she claims no reason for the pain if everything else checks out fine then what do i do im still driking lots of water and only that i barely eat cuz im so neaseated and then when i do my stomach hurts.i ve had to change my diet  awhile back due to ibs but now i find out alot of that so called healthy stuff i was eating now can possibly cause my stones.at this point im not worried about the stones its the pain i really want gone and what do i do with that if i already drink lots of water i eat barely no meat at this point ive up my calcium intake since i never really drank milk. so at this point i assume an infection that they are not seeing so now what???
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489228_tn?1291535054
Make sure you get copies of your tests.  Often they don't call because they don't think it is important.  I never got the call either and mine was 14 on with normal being 30-80.
They just did not think it was important. IT IS  AND also if your levels are on the low side of normal even 30 it can increase your pain, energy and infection.

As far as the infection goes understanding that basically a biofilm infection is where low level bacteria literally set up a fortress within our calcifications.  See biofilm will attach to any foreign object in your body, stents, catheters, and kidney stones.  Once they do they go into a low level mellow state and invite all other bacteria to party with them. (please excuse my casual explanation it just helps me to explain it.).  The point is that they are able to communicate and exchanged info. including antibiotic resistance.

The bad news is that at this point, we understand that there is currently no way to CURE the infection.  The goal of treatment is simply to maintain the best possible quality of life and limit symtoms (symptoms), until a cure is found for this type infection.  There is a great deal of research on biofilm infections themselves going on.
If your symptoms improve on antibiotics you need to stay on them.  Intially a higher dose to knock the infection back.  Then once all the chronic pain symptoms are
better, then you slowly back down to find the lowest possible dose of antibiotics.  Maybe even some of the naturals. I had a year with Silverbiotics alone, which in my case is huge.  If you have not read, half way through a stone surgery 14 years ago, they realized the instruments were not sterile.  They had already scoped both sides of my kidney and I had hospital resistant bacteria that move into my body.  I currently live on 2 full strength antibiotics to control the pain and symptoms, without them
I am unable to function. IN 08' I was on IV's.  Then I learned about Dr. Wolf's procedure.  When the antibiotics no longer control the symptoms then Dr. Wolf's procedure is an option.  My belief is that it blasts back into the calcifications and allows the antibiotics to penetrate deeper into the kidney..He believes the procedure release pressure build up with in the collecting ducts.  I came home to a doctor who understands complicated infections and was given 2 weeks of IV's.  I have not required IV's since then.

There is also another theory that states low level electrical current along with antibiotics is able to more effectively penetrate the biofilm as well.  I have an Energy Wellness machine, too.  I do not mention this because they are not cheap, but there were times before I had the surgery, when my pain levels was off the wall and even the pain meds did not work, that this would help me through.  The machine is FDA  approved and some insurance may cover it... and if your interested I can order them.  I am willing to do so at my discount but it not much.

So hang in there, we need each other to make a difference!!

Shelly
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Avatar_n_tn
Shelly, mucho apologies. Its very clear you care and have gone through something I probably could/would never endure without calling Dr Kvorkian. Certainly I don't suggest that option. It is just a joke.

jess - I hope this experience changes you for the better because as Shelly states we have to band together, not so much against doctors.... but sometimes it seems like it has to be that way in order to get proper treatment. I'm sure this experience has taught you quickly that doctors aren't the omnipotent (all powerful) or omniscient (all knowing) Gods that their industry purports them all to be. To me if healthcare was truly healthcare and not "health business" many people such as yourself would've already been properly treated and made well.

It is correct that in some cases cranberry isn't good for some people, but that's why I stress caution and about living "balanced" because that all means to live in a way that your own body responds best to certain foods, drinks, supplements, vitamins, medicine etc.. Personally I think too much and research too much before I try certain regimens, but in the end I do make an informed/balanced decision because of it.

You mentioned a couple things that struck me as complications. IBS and that diet you went to. I would look very closely at what you ate and perhaps try to find some foods/drinks/supplements that help eliminate stones that are caused by those diet foods you probably ate in excess.

IBS - While you may very well have IBS and went through a stressful procedure to diagnose it, it is also very possible you don't have IBS and that the very medicines they gave you for it could be contributing to the cause of your constant stomach upset.

Anti-acid's over long periods of time (a lot of times prescribed for IBS) can actually cause what appears to be IBS and cause irritated stomach lining. I would also think that anti-acid's perhaps are keeping all of your food from digesting and therefore its being handled more-so by your urinary and colon systems. This could also be  IBS is also misdiagnosed in people who are under a lot of stress, not enough sleep and who lead overly busy lives. If you aren't getting a full 8 to even 10 hours a sleep a night its probably not enough. Stress (which you may or may not be aware that you have because it may be normal everyday life to you) can cause IBS looking symptoms. If you are a very sensitive person and are easily upset etc... you may be a very stressful person.

I realize its hard not to be stressed when in such pain and enduring such things everyday with your UTI's and MSK situation, but one of the best things you can do is try to de-stress yourself, breathing treatments, maybe anti-anxiety meds (if it doesn't make your situation worse) and try to relax as much as possible and lay still as much as possible. With stone(s) the more movement you do the worse it will feel unless you can find a comfort position. I experimented with several body positions before I found an odd one that worked (hunched over my knees forward on the floor slightly on my side with my head at facing the ground).

If you can ease your stress, it eases/relaxes the whole body muscles, organs etc.. and things work better.... including the urinary system.
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I was not done with that previous post and accidentally hit submit... I was in mid-edit with it. I will finish/correct in next post.
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Mid-sentence up there I was writing: This could also be....  ..contributing to your upset stomach and who knows what it could be doing to your kidneys. My girlfriend recently had severe side effects to Protonix, which she'll still deny she had (she's a nurse), but she was taking Protonix daily for several months for acid reflux problems (or what appeared to be acid reflux) and continually she got worse with stomach pains/upset stomach etc.. headaches.. and finally went in the hospital. Well, at the time I hadn't figured out the Protonix was causing her side effects yet and the hospital put an IV in her with liquid Protonix in it. As she was there in the hospital she became much worse than she was and never really felt better. They ran an array of tests (no colon or throat endoscopy though) and found nothing wrong with her so they chalked it up to stress. She kept taking the Protonix after she left and then we went on a vacation to hopefully relieve stress and while on vacation she lost function of the right side of her face (like bells palsy).

Immediately I began looking into all the documentation for any medications she was taking. Of course they say that only 1% of people show side effects to Protonix because the drug makers don't want to look bad. After I read that there are possible nerve related side effects from a fairly reputable medical knowledge web site (medicinenet.com) I began searching further and found that other people had lost some motor/movement functions as a result of nerve inflammation/damage from taking Protonix and that these people exhibited signs of IBS (inflammed stomach/intestinal lining along with possible ulcers) as a side effect of Protonix. If you ask a Doctor they'll quickly dismiss this, but its real. While we were on the trip after I realized this I immediately asked her to stop taking the Protonix and said a prayer. She began to feel better almost immediately next day and while her facial paralysis remained for a couple of days it was only 3 days before she regained movement to it, which her doctor said was a record recovery time for having what they felt was bells palsy (which is normally caused by viral reasons, which she didn't/doesn't have). I believe firmly that the reason for quick recovery was because of quick stopping of the Protonix.

All anti-acids aren't for everyone. Everything in balance. You have to find the right anti-acid and right dose for every particular person and even then the best thing to do most of the time can be to just manage your diet better, be less stressed and not take any anti-acids at all because to need them just treats a symptom of the real problem instead of getting rid of the problem. A natural alternative I've found to these unnatural medicines is taking Bragg's Apple Cidar Vinegar. It is raw unfiltered apple cidar vinegar and greatly helps with acid reflux and digestion issues. You take about 1-2 tablespoons per dose with about 8-10oz of water 3 times a day. Not trying to sell the stuff, but I was skeptical before doing it and it actually worked. There are other non-related claims of people losing weight with it. I thought I was losing weight with it, but that was just apparently a starter effect. I lost about 8 lbs and then leveled off and I wasn't doing anything else to lose it.

It helps you be "regular" digestive system-wise and I've read its possible it can help dissolve stones in your kidneys and other undigested things in your stomach/colon too. You may want to look it up, but if I were you I'd go get some or order some immediately. It is sold at least at GNC that I know of and if not you can get it online and some vitamin web sites. You can mix it with crystal light if you can't stand the taste, but I just drink it straight in water cause thats best. It only costs around $5 for the large bottle. I keep it on my table next to my vitamins to take before I eat.

Stones - No matter what you are told or not told the fact of the matter is you are going to have pain and discomfort as long as stones exist in your urinary system. If there are many stones, you may want to opt for the ultrasonic treatment that uses ultrasonic sound to break them up so they will pass out of you. You probably have "many stones" stuck in you, but thats just a guess.

If you feel your special diet is what caused all this then after having the ultrasonic thing done you can adjust your diet accordingly to keep future stones from being made. Best thing to do too is be sure you know the make-up of the stones to be sure about what foods are bad for you personally. For me when I had stones it was from oxalate crystals, which I was told was rare to see. I don't know whether or not if that is true, but after a 48 hour urine collection & analysis that was revealed and the only commonality for me was too much Vitamin C tablets. Ever since then I haven't excessed in vitamin C tablets or too many foods at once that contain it and I have been fine.

Not telling you what to do, but if I was in your situation I'd stop all medications/vitamins  immediately (unless they are vital to your survival like blood pressure or cholesterol meds) except for the Cipro or other antibiotic to treat the infection. Anti-acids may also interfere with the effectiveness of the Cipro by not letting all of it digest into your system and I'm willing to bet you are on anti-acids being that you were told you have IBS (which may or may not be true if you are just "stressed" or anxiety ridden). Along with the Cipro I'd try the Bragg's apple cidar vinegar regimen and see how things go for a week or so. If you see/feel improvement, keep doing it till you are off the Cipro and keep doing it after you are off the Cipro and stop taking all other medications, especially anti-acids.

I realize I'm saying to stop taking medications that treat your IBS, but thats up to you to decide to take a chance on. I wouldn't stop taking the IBS meds though till you have the Bragg's apple cidar vinegar (or other kind of unfiltered apple cidar vinegar) in hand. I tend to feel that IBS medication just makes people worse by robbing their bodies of proper nutrient absorption. You could probably just as effectively treat IBS with yoga instead of meds once your stone situation is resolved.

I would really like to know how you feel after trying the apple cidar vinegar I recommended. If you try it, please post back and keep us updated on what happens with your situation.
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wow ,msk dose my you sick in the belly,a few months ago i throw up for 24 day,was in the hospital 11 times,it was all from stones moving!!also infection,so after talking to about 100 msk people they all get upset belly..it's part of msk.i was always told not to take roaids because of the calicum in them.
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489228_tn?1291535054
Julie,
  I have also found of the many I have talked to that upset stomach is related but it could me connected to the chronic infection as much as to the MSK.  Nausea can also be connected to pain.  The issues is true searcher etc.that a balance is an important issue
in our health issue but for us it is a little harder and more complicated.  I studied midwifery and had two of my kids at home.  You see diet etc., for us does help but at least in my case I have since little improvement in the number of stones with this  alone.  HOWEVER my doctors are amazed that there seems to be little increase in the calcifications or growth they just consistently lots of little ones.  For some of us Vit C can actually increase stones because of the oxalate issues... I can't take it.
For calcium oxalate stones Vit. B-6 competes for the oxalate and Magnesium also helps to put the calcium in your bones not in your urine.  I can no longer tolerate the B-6 with my IC.

One of the bigger issues for us, is that along with the defect in filtration we often have metabolic issues that complicate things.  These may not be seen in a standard 24hour urine either.  For instance I told my doctors if I take calcium my stones increase... but all my test were normal. WHY, because I was watching my diet.  I finally went to South Western Univ, and they did fasting tests then gave me a load of calcium.  My blood levels went up 1 pt. and my urine went off the charts!!!  The also knew enough to check my bone density which is points away from osteoporosis at the time I was only 42!
I personally believe this is a crucial area to prevent problems in young MSK patients.

This is another reason checking our Vit D is crucial and don't count on the doctor to interpret the test esp. a uro.  Get it and take it to your GP and read even if it is low normal it can contribute to the issues.  Vit D in the RIGHT DOSAGE put the calcium in our bones too.

As far as sonic treatment for breaking up the stone/Litho... there can side effects to and for us, sometimes it helps other times it can make them worse.  You have to understand we do not have all the stones in the meat of the kidney like most, the form within the collecting ducts. Litho or even last ureteroscopic surgery that Dr. Wolf does needs to be reserved for when nothing else seems to be controlling the pain issues.

If possible try taking some natural antibiotics first... if they help they do keep a better balance etc. Silverbiotic by American biotech labs is my favorite, D-Mannose, Garlic, Oregano etc. there are many.  If these don't help then you may need long term antibiotic treatment, but with IBS already make sure your taking a good probiotic, hours before your antibiotic on an empty stomach if you can.  This puts the good flora back in your body.  The Silverbiotic also helps kill the yeast over growth.

My point being balance is crucial I agree but for us it is like juggling and can be hard to achieve... that is why it is sooo important we talk, we share, we educate and that we treat our doctors with respect at the same time. So that the patient that follows he may take more seriously even if he/she initially blows you off.  This is not in any a criticism
no one said anything wrong here,  it is just in my search for answers I have seen boards when doctors were mocked and put down so much that when they came to the site looking for answers that no one else was giving them, they were immediately turned off.
There are many good doctors who do care about their patients who want to help but don't know how.  Our job is to help them know how... so we can all work together!

Shelly
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I would like to get in touch with you
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168348_tn?1379360675
You can try to send her a private message.  I will try to alert her to your post.

Welcome!

C~
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