Medullary Sponge Kidney Disease (MSK) Community
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684133 tn?1289591585

Helping others to understand....

Hi everyone,

Today I had an appointment with my GP, Dr. Mary H. in Louisville, KY.  On the off chance that she may read this post, and I am hoping that she will, let me say that I do need your help.  Those of you that are more symptomatic in your MSK, I need for you to use this forum to share some of your own experiences.  Personally, I feel as though I am having extreme difficulty in expressing my need for effective pain management without coming off sounding like I am merely seeking drugs.  If that was what I was doing, I surely wouldn't have been there.  Dr. M.H. has exressed an interest in finding out more about MSK... (progress), and I intend to see that she gets the information that she desires.  This may be my shot at finally getting some control over this condition that at this time is controlling me.  I am sick of it!  So, again, anyone who is willing, please share what you know and have been through to achieve effective pain management.  I am surely envious of those who are asymptomatic at this time.  Unfortunately, I am not in your group as I have been struggling and suffering for years now.  There was a time that I was receiving proper pain management, and now I feel as though I am having to start over.  My doc doesn't want me to have to visit the Emergency Room due to the repeating of unnecessary CT scans, but she also isn't managing my pain effectively at all.  Aside from that, if I was to fill any other prescriptions from any other docs, it would nullify the contract that I have with her.  

I guess the best part of this is having a doctor who wants to learn about symptomatic MSK.  The other best part is that perhaps I can get my life back.  I am just so tired of suffering...

It is my belief that she will be checking this forum to see what you have to say, so thank you, in advance, for all your help.

Thanks guys (and gals),
23 Responses
592774 tn?1325393742
If your GP is not trying to control your pain, why do you have a pain/narcotic contract with her? Can she refer you (and your contract) to a pain doc or a urologist that understands?
I have a uro that believes me (seeing my kidneys from the inside probably helped.) He has given me several different Rx's to deal with pain.
There is a healthpage that deals with our pain.

489228 tn?1291531454
Colleen if you have my e-mail address send me an e-mail and I will send you
research articles to take your doctor!  I also have a research article that I am working on to but need to talk to you offline, since I can not post these online etc.  They are PDF articles and so can not be printed here without permission!!

I will help you as much as I can!
684133 tn?1289591585
What a great point that you bring up!  It is my belief and hope that perhaps my doc will attempt to do a better job at pain management if I am able to get her this information from other MSK sufferers.  If it doesn't work out I will be forced to try to find another doc...AGAIN.  This is such a pain!  No pun intended.  She has been pretty honest in telling me that she really doesn't know a lot about MSK, etc.  I do like her and would like to keep her as my doc so I am just putting out this effort.  We'll see what happens.

592774 tn?1325393742
It really stinks sometimes to have to deal with a condition that is not very well known. MSK can be very complicated. A GP should not be expected to know much about it. That is why they are General Practitioners, not Specialist. Your GP should have referred you to a urologist at the same appointment that she told  she doesn't know a lot about MSK! Would she be trying to treat someone who had severe diabetes, cancer or a broken ankle? Of course not! GRRRR!
I have a family practice doctor, who is there for anything non kidney, a urologist for the MSK stones, pain and blockages and a nephrologist that follows my kidney function and tries to correct any metabolic imbalances that will cause me to form even more stones.
It really can be overwhelming trying to coordinate it all, but I really feel like they all play an important part in my overall health care.
Can't you keep your gp as your primary physician, for everything except msk? Even have her coordinate and consult with your uro or nephro?
489228 tn?1291531454
Nancy you raise an interesting thing.  I have often wondered about seeing a nephrologist,,
but my URO acts like this is not important.. and often blows off the metabolic issues or even decrease in kidney function.  He is a great guy, but sometimes I feel like I wish
I could see a nephrologist to just talk to about the long term issues....

Not sure how to do that without making the URO mad???  

684133 tn?1289591585
Let me first of all defend my GP just a little bit.  She is not in any way trying to detour me from seeing a specialist of any kind.  She had been very honest in sharing with me that she is not all that knowledgeable about MSK in the first place.  She says that she would be interested in conferring with a Nephrologist personally who would be able to "educate" her regarding the treatment(s) that are available to patients with MSK as well as any secondary renal problems.  Connected to MSK, or not, I have also been diagnosed with Renal Tubular Acidosis and uncontrolled Hypertension.  I am still extrememly deficient in Vitamin D2.  I believe that the "normal range" is somewhere around 35-55.  To quote one of the Nephrologist... "...we would like for a renal patient to be on the higher end of normal, around 50-55..."  My personal result is 4!!!  I have been taking the 50,000 caplet three times a week as prescribed for over a year and am still testing in a range below ten.  It's called Ergo something or the other...  Okay, I got a bit off track, so back pn track I go.

So, the GP is very encouraging about me going to the Nephrologist, almost insistant about it.  As far as a Urologist goes, they are evidently only useful when surgical intervention is needed.  It has been my personal experience that it is also the UROlogist who seem to be of the opinion that we don't ever hurt unless we actually have a stone positioned "in the ureter".  I consider them to be very closed minded as whole.  I realize there must be exceptions, and am only sharing my own personal experiences here regarding this matter.  When I have needed surgical interventions and/or procedures the GP and/or Nephrologist have both referred me there, to the Urologist.  

The reason that I need my GP is because she is the one who has to handle my maintenance medications.  My blood pressure needs to be monitored more than what a Uro or Nephro should do due to my frequency of speciality appointments, etc.  She, under the advice of specialists, does whatever else is needed such as Urocit-K, Sodium Bicarbonate, Potassium, Premarin, Vitamin D2, and pain meds.  I am also supposed to be on Fosamax.

It is always best, in my opinion, to have one doctor to regulate all medications whether they be every day maintenance meds or ever changing needed pain management meds.  At least this way, it is most of the time faster and easier to get refills when needed or any changes need to be made.  It is better for me to have one list of them all in one place.  What got all of this started is the fact that my pain management is ineffective for my own personal pain levels.  I am having bouts of daily pain that is just uncontrolled.  I pass those pepper flake looking thingys all the time.  I realize how small they must appear to someone who doesn't know but I have to say that they feel so much larger than they ever appear!!!  All in all, I would say that I actually pass anywhere from three to six stones a month... EVERY month!  According to how long they hang in the ureter, it ends up being quite a few days out of the month that I am actually passing something.  Those days when there is "nothing in the ureter", HELLO TO ALL UROs AND ANY OTHER DOCS OUT THERE... I STILL HURT!!!  

I find it utterly ridiculous that anyone would EVER attempt to, or have the audacity, to judge MY or rate anyone's pain levels except for their own...

My frustration has come through where I read earlier where someone has replied on another site that they too have MSK but are lucky enough to not have some of the problems that some other MSKers do.  It would be only right that folks who are not suffering to the degree that others are should be extremely grateful.  We should always remember that we should encourage one another and remain open hearted and open minded.  We all have different challenges pertaining to MSK which is why even the docs don't have a grasp on this condition in the first place.  If we are to use and benefit from a forum such as this then we must remember that this is a support site as well as place where we may grow and may, in fact, learn something.  What a wonderful opportunity!  Even the most knowledgeable can benefit from new information shared here.  Everyone should always feel comfortable in sharing and/or venting here.  Just a note... Thank you very much for always allowing me to feel welcome and understood here.  I am always available, for any of you, if you need a shoulder to cry on, a brain and ears to bounce off of, or a heart to hug.   (You won't find a lot of benefit from my kidneys themselves, LOL)... Was that one even remotely funny?  Obviously, I must be getting very tired now.

Good night and good thoughts to all of you!

489228 tn?1291531454
   I understand completely. I have been blessed with both a good uro and GP who
acknowledge my pain even when they may or may not totally understand it. I have given my GP info on MSK as well and honestly when it comes to the Vit D levels,
the bone density loss, pain etc.  He maintains those meds etc. for me.  MY URO controls my IC special treatments and meds, except oral pain meds.  Both are
kept informed on all areas of what we are doing.

I am trying to get some stuff together for you, to take to your GP by the way.  It's just
been crazy with the wedding and not feeling well either.  I hope to get you a disc with
all the articles I can on it, and then only copy those most important one to save time and money.  Your GP will read a disc.

   MY attitude with both MSK and IC, that education any one, esp. doctors of all areas of medicine, about MSK, chronic illness and pain is important.  We never know how
changing one doctors opinion on the pain issues with MSK, can make the road easier for the patients that follow us.  I tell those I work with in the IC realm to always consider the patients that must follow them, leave or remain in a way that will make the road for the next patient smoother not harder.

  I will try to get all that together for you by this weekend.  If you have someone who
you know can print things out or put them on a disc, that lives close to you, I could
do this much quicker.  However we will do what we have to to the best of my ability.
I was actually hoping that I could also get this medical paper finished in time to send with all the info too, but just may not be able to... that may have to follow up later.....,

   I do think Nancy statement was meant more as a suggestions, since many times
a GP can not maintain MSK, however we are all different, live in different areas, and again like with IC if you find a doctor who will listen, help you and treat your pain etc,
then feel blessed and stick with them for the things that you can!

   Hang in there, your not alone in your pain as I know from the forum you know

684133 tn?1289591585
Thank you in advance for all your hard work.  I appreciate it so very much!

168348 tn?1379357075

I have had the pain in my kidneys, ureters with clear CT Scans .. they look @ you in the ER as if you know too much about your own condition and are a looney toone.  It is demoralizing and upsetting when you are in pain and there is no answer.  Please know my thoughts are with you.

I know we've done some Vit D comparisons over on my journal, etc.  What is your level?  Some have said that after starting on Vit D if deficient that some of the pain has lifted considerably.  Just a thought to run by you.

My Urologist is one of the best in the US being a top notch Uro out of a leading NYC Hospital and he is set apart because he listens, and explains, and has knowledge about MSK and is prudent to let me see a local Dr for UTI's, etc., but he always coordinates my care.

I wish I could help and have an answer for you ..... I often wonder if it's our nerve endings of some sort .. with the pain we can feel yet be stone free ?!

This community is one that has been a delight to have helped so many people and a way for us to keep in touch with one another as we all share the same thing and that is this anamoly we deal with and fight to find a cure for, and at the very least, work hard to find the right docs who undertand this and treat us with respect.

I respect your Dr for tring to learn more about MSK, and please may she know she's welcome to join our community .. if so let MedHelp know by her sending a Private Message to:  MH Community Mgr and the MH Mgr will be certain she gets a special icon with a medical symbol on it.

With regards,
592774 tn?1325393742
Hi, I am sorry that I misunderstood your GP. I did not intend to offend you. I agree that a GP or primary doctor is important to coordinate all your care. The right hand needs to know what the left hand is doing!  I consider my 3 docs to be my treatment "team" working together for me. They send reports to each other and all lab results go to all 3 of them.
I only go twice a year to the nephrologist. She orders special tests and gives RX to fine tune ph and uric acid levels for me.

BTW my Uro is one that believes me, gives me STRONG pain meds, gave me the bactrim long term when I asked, and gets me in to surgery the same day if I have a stone blocking my kidney. I have had 3 other uro's and they were not understanding
Avatar universal
I think that it is important to have a GP, a urologist, and a nephrologist that you trust and will coordinate your care. My own personal history started with two gynecologic surgies that did not totally resolve all of the pain issues that I was having. By fluke, after the hysterectomy, I had a chronic cough which resulted in a CT scan.. Luckily my neighbor is a radiologist at the hospital and he called me to tell me my lungs were fine, but I had MSK, which he assumed I already knew.  I didn't, so I followed up with a GP who ordered the abdominal/pelvic CT and confirmed the diagnosis. The GP told me I would be okay and just drink a lot of water. I didn't feel confident with this, so I followed up with a urologist who I had seen a few years prior for an unrelenting bladder infection. He pulled up my CT and looked at it closer and found that there was a 7mm stone in ureter that a different radiologist has missed (though I'm not sure how). I had my neighbor look at it to confirm it.   I had surgery, but the urologist had me follow up with a nephrologist for all the metabolic issues.  I saw two different nephrologists, and found one I liked. I also had another surgery for another stone that dislodged and he also cleared the remaining large stones from my right side.

I do know that my urologist and nephrologist have slightly different opinions on how to treat MSK.  My nephrologist is slightly conservative and says he will not put me on any medication unless I actually need it. The urologist said he would have me take the Urocit K.  I do have confidence in both of them, but it is good to have the different opinions.  There is not a diffinitive way to treat this.  It is a congenital disease with a very low mortality, so it doesn't raise a lot of eyebrows. It is a PITA - a Pain In The A**. I do know that my lifelong maintenance program includes at minimum a yearly trip to the urologist and nephrologist.  I have yet to follow up with the GP. I do not like the fact that somedays you feel great and other days you feel like a truck hit you for no reason.

Anyway, enough said. I'm at home today for the most part for the 24 hour urine test. Definitely not my favorite thing to do.  I get my Vit D levels checked this week and I will update the results of that.

168348 tn?1379357075
Hi Jodi,

Yes, please let us know your Vit D results .. this is most interesting that most of us here on MSK have low Vit D

and thanks so much for your input on the above post!

489228 tn?1291531454
HI, Jodi and do let us know.  it has been very interesting that most of us
have had low Vit D. I appreciate your input too, I keep wondering about seeing a nephrologist.

At this point when you feel like a you've been hit by a truck
do you have the kidney pain etc.?

     Were they able to resolve your chronic bladder infections?  If not let me know
we have a website to support all chronic bladder pain patients, and though a lot of the info on the site is for Interstitial Cystitis we do have quite a bit on the chronic infections too since this is something I battle.  If I can help you in any way let me know!

Director of MOARK IC
Avatar universal
I'm surprised after all the extensive surgery you had, that no one indicated that you see a nephrologist.  It would seem to me that it would be key to do everything possible to help prevent stones from reforming.

In response to your question about being hit by a truck-- kidney pain comes and goes, but it is manageable.  Somedays I just feel really tired for no reason, or very nauseated.  Often an combo of the two. It gets old.  I'm very active. I teach aerobic classes regularly, cross country ski, run, etc, so I know that I'm not lazy. I am of the appropriate weight and I always eat very healthy, so it is frustrating.  I blamed it on the surgeries from the prior year, but it is several months past that and I have dealt with lingering pain issues from that as I discussed before.  I will bring it up to the nephrologist next week.

Luckily, I was able to resolve my chronic IC by eliminating some foods and taking a cranberry and Vit C supplement.  I now realize that the Vit C probably wasn't the best thing for me, but I didn't know at the time.

489228 tn?1291531454
I am surprised I have not been sent to a nephrologist as well, but in our town we
have one that comes on a rotation only.

If the kidney pain comes and goes it can be several things, passing even small amounts
can cause pain, since we can become hypersensitive to debris etc.  Also many of us find we have more pain when we are dehydrated or eat too much protein.  Watch this and see how your respond.  Lastly I have read that the back pressure coming and going can be caused by too much trying to go through the tubes at a time and ours don't drain well.  Whoops, I thought of another one.  It is also possible especially if you are very active etc. to have scar tissue form after a procedure.  I went to a Pelvic Pain PT, who after years of side pain, found I had adhesions from a surgery done when I was 16.  I am in my 40's and the pain is now gone!

hmmm, for most us with IC cranberry is one of the top ten triggers.  I do not wish to
question it, since each of find what helps differently, however my URO feels many
IC patients are actually misdiagnosed chronic cystitis patients.  He has cured many
with diet and antibiotics.  Those of us that continue to have symptoms after months on
antibiotics, a cysto scope, CT etc. he then will treat for IC!  It is possible esp with the chronic infection connection with MSK, be that the reason cranberry worked for you is that it keeps the bacteria from attaching.  Both the cranberry and Vit increase the acid in your urine, something most ICer's can not tolerate AT ALL.  What ever it was I am
just thrilled you were able to get it under control.

Hope you are back up to par soom!helly Mattewson
684133 tn?1289591585

I sent you a personal e-mail but in case you get here first I want to let you know that I did receive your letter today in the mail.  It is really good.  Nice and to the point and the references for the doc are super.  You have said exactly what I am trying to convey to my doctor... and said it very well.

Thank you again so much for your help.  I appreciate it all so much!

489228 tn?1291531454
whew can you tell I wrote my last post while falling asleep at the computer...at times it is scary what I type in the over tired state...

I am so glad you got and just hope and pray that it opens the heart of your
doctor to learn more about us, and truly finds ways to help you....
you might copy Nancy's post on here today or yesterday as well.  It might help your
doctor see the power of a physician who cares enough to seek out of the box,
and treat this condition, and the amazing pay off to see their patient living life again.


684133 tn?1289591585
Where can I find Nancy's posts from those two days?  

Aren't I just so computer savvy?

489228 tn?1291531454

Here is the link you can also go to the forum,
and look for the posts under Poof I am better

684133 tn?1289591585

805104 tn?1242334671
I'm new here and have only just recently been told that I have MSK, my GP, by her own admission has said she know's nothing about msk, in fact she looked very surprised about it. The only thing she said was that it is benign....well thats great for her, what about the 10% of msker's that go onto get full blown damage because of the complications.
I phoned the surgery to day to ask for a prescription for Dihydrocodiene (the only pain med I have been offered) and the receptionist was umming and aarring as to whether to ask GP for it...gggrrr...

I too wish to educate my GP that just because MSK is benign it doesn't mean that there are no complications to it.....the pain can be constant day after day, it makes me extremely tired, I feel as if I am constantly 'waiting' for a stone attack, maybe thats why my whole body aches at times, psychologically it's like a ticking clock, you can't relax 'just in case'.

You sound as if you have a great GP there, hang onto her, it is so hard to find one you can trust and talk to without feeling as if they think you are making the whole thing up (a whole other story,lol).

I have been told by an Orthopaedic Surgeon that I should be referred to an Endocrinologist because of my high calcium (11.4) he said that my numbness and tingling in my hands could be related to the kidney/high calcium probs but GP said wait 6 months (for what!!!). I dont' see my Uro again for another 12 months??? I had to suggest to him about doing a 24hr urine test...thats what annoys me the most..you read up on your dx because it is your body and then the medical proffs don't like it.

Anyways, sorry for droaning on, I hope your GP and you can find an answer, if you do maybe you can share,lol..

Take care,
love Sam x
Avatar universal
My name is Stacie and I have talked to you before.  I live in Louisville, KY. Have you ever seen a urologist before? I am in the process of trying to find another one.
Avatar universal
Intersting posts. WTG. You should ALWAYS have a Nephro. with MSK or any kidney disease. The Uro. is just a surgeon the Nephro. is the disease doc. He can find meds and diets to help you from hopefully making more.
I am on Chlorthalidon to prevent stones from re-curring. I can not have surgeries until the Chlor. is in effect...whats the point of having stones removed if they can come back so quickly???
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