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MEDULLARY SPONGE KIDNEY: What Condition My Condition is In...

Updated on April 6, 2013
When the 'KIDS' Attack...
When the 'KIDS' Attack...
Non-Spongy... Tres Sexy!
Non-Spongy... Tres Sexy!

MEDULLARY SPONGE KIDNEY (MSK) aka CACCHI-RICCI DISEASE

The ONLY Symptom...

A couple long months ago, whilst answering the call of Mother Nature - I stood up to, ya know - FLUSH - when an ocean of, ya know - BLOOD - in the toilet caught my undivided attention.

DEEP, DARK, RED BLOOD!

Now, having had a lifetime of misadventure with regard to the URINARY TRACT (kidney stones, infections...) I didn't need to be told that, ya know - BLOOD IN THE PEE PEE (HEMATURIA) - when NOT accompanied by pain - is NOT a good thing.

I should add that this was the THIRD time in a FOUR month period that this blood... had mysteriously appeared in my toilet! I could no longer afford to be - or allow my DOCTOR to be, ya know - LACKADAISICAL - about it...

In my defense - on both of the previous occasions - the blood SEEMED to coincided with a URINARY TRACT INFECTION (UTI) and SEEMED to clear up with a dose of ANTI-BIOTIC.

Key word: 'SEEMED'...

This time - after TWO rounds of anti-biotic with NO change - other than getting, ya know - DARKER - it was time to have a few MEDICAL TESTS done!


The Journey Begins..
The Journey Begins..
Only a FOUR Hour Wait Today..
Only a FOUR Hour Wait Today..

THE 'SYSTEM'.....


SO NOW, in the midst of the THIRD (and ongoing) episode - and having completed - and 'passed' - the initial requisite tests, ya know - SPECIMENS, CULTURES, COLLECTIONS, BLOOD - I was finally sent to a specialist for a SCOPE OF THE BLADDER - the 'definitive' test for detecting abnormalities and, ya know - THE BIG 'C'!

After waiting almost a month for the test - it too came back 'NEGATIVE'.

Both the GP and the Urologist were mystified.

Mystified, I tell you.

It wa decided that I would now be sent for a RENAL IVP MRI - the 'definitive' test for detecting abnormalities and, ya know - THE BIG 'C'!

But, 'NOW' doesn't mean, ya know - NOW - in the world of medicine!

THIS test was scheduled for yet another SIX WEEKS down the meandering pathway of an indifferent medical system.

Everyday I was getting dizzier and dizzier - flushing more and more blood down the toilet!

While I did my best to remain calm - the thought did occur to me that I could be, ya know - DEAD - in SIX WEEKS!

When I called the Doctor's Office to see if anything could be done, I was told that the Urologist was, ya know - ON VACATION - and if I became, ya know - CONCERNED - I should consider presenting myself to any EMERGENCY ROOM.

Have a, ya know - NICE DAY!

Three weeks later - that's exactly what I did.


UNEXPECTED DIAGNOSIS...


And, THAT'S where an almost two month roller coaster ride of waiting, wondering - and blase doctors - came to a sudden and unexpected HALT!

That's where Dr.Tom Bowman - an INCREDIBLY BRILLIANT and harried Emergency Room Doctor - made the bold (and unnecessary) decision to hit the, ya know - BOOKS - in order to find out what the heck it was that he was looking at!

Dr. Tom Bowman could have simply sent the mysterious CT SCAN results to the requisite doctors - and carried on to the next impatient patient, BUT, instead - Dr. Tom Bowman went the extra mile!

And, in so doing - allowed my mind to stop meandering off to the, ya know - 'WHAT IF' SECTION OF MY CEREBELLUM - for the first time in months!

Thank you, Doctor Tom Bowman!


GOOGLE-Y-GOOK..
GOOGLE-Y-GOOK..
Medullary Sponge Kidney
Medullary Sponge Kidney

'GOOGLE'-Y-GOOK...


I chose to share this journey for one reason: This condition was IMPOSSIBLE to find on GOOGLE - or ANY other search engine - UNTIL I had it's actual name!

Wikipedia lists TWELVE 'RARE' CAUSES for Hematuria (blood in urine) - NONE of which describes, ya know - THIS DISEASE!

Now...what good is THAT??

Medullary Sponge Kidney is a fairly rare disorder - 1 in approx. 5,000-20,000 persons.

It is benign (thankfully), congenital (it doesn't go away), unilateral (affects both kidneys) - and, while not hereditary - it is thought to be a birth defect that isn't discovered for decades - if ever..

There is a test to detect it.

There is no treatment, per se - only 'management' of symptoms which could include pain, infection, blood and stones - and a few other little goodies..

It may - or may not - get progressively worse...

It could shorten life, but, ya know - LIFE - shortens life..(just sayin'..)

It's not a 'moneymaker' for the medical field OR the drug companies...

The two most 'common' diagnoses associated with this symptom are, ya know - BLADDER and KIDNEY CANCER!

And NOW - We ALL know...


I'M BAAAAACK....


This would have been a MUCH more difficult journey if not for the prayers, support - and sanity - of my friends and family!

TIGHT HUGS going out to: Deb, Dennis, Dana, Henda, Shauna, Marlene, Esther, Nellieanna, Wayne, Rolly, Vincent, Eddy, Rose, Vicky, Missy P - and oodles more who probably won't read this..

Ruby Fuller was an incredible help and inspiration - and ultimately - got me off my butt and into the hospital - THANK YOU dear!

I found patience and grace whenever I thought of my cousin Maureen..

And last but not least - I don't know what I'd have done if it weren't for my FyrFytr - Bob! He was with me EVERY step of the way, and I am deeply grateful for his broad shoulders!

In closing - I'M, ya know - BAAAAAACK!

Ya can't get rid of me that easily!

lol...

Have you ever heard of this disease before?

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What Condition My Condition Was In...

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    • profile image

      Canucklehead 19 months ago

      Just diagnosed with this condition weeks ago

    • schoolgirlforreal profile image

      schoolgirlforreal 2 years ago from USA

      Hi Leslie, glad you are ok....Who do you mean by Rose? You're right I never read this. It sucks when doctors don't know stuff..I just found out a few years ago I have Pre Menstrual Dysphoric Disorder which is very rare too... xx

    • profile image

      Holly laroche 2 years ago

      Hi!

      Well. It's about 4 am on this seems to be nasty outside Quebec spring morning, and I'm just on the way back from........peeling.lollipop again!

      I have MSK as well, and have had it for about 20 of my 41 years of life.

      I have been diagnosed about 5 years ago and pretty much been on my own to deal with it. I have a wonderful family doctor who knows I'm not a druggie and helps easy the pain as much as possible. I do have a new urologist that I met yesterday and look forward in this new step in my life.

      Thank you for the giggle and I'm looking forward in reading your pins

    • profile image

      Vickiw 3 years ago

      Leslie - couldn't resist dropping by to say Hi! Glad to hear you are doing so well these days. Often think about you!

      Love, Vicki

    • ImKarn23 profile image
      Author

      Karen Silverman 3 years ago

      Hi Mary..

      I am so sorry dear. I found a natural product called D-mannose. I joined a couple msk groups on fb and heard of it through them. It's been like a miracle for me. I highly recommend it if you suffer from infections that do not end. I also haven't had a kid(neystone) in 2 yearsxx

    • profile image

      mary Armstrong 3 years ago

      I know what you going thru I also have msk(medullary sponge kidney) its a very painful disease I suffer daily. The key is finding a good doctor that understands and knows how to treat it .

    • ImKarn23 profile image
      Author

      Karen Silverman 3 years ago

      Hi, Kathryn! Sorry to have missed your comment - i don't get to the hub often anymore. Other than to read, of course!

      I know you know where to find me, tho!

      HUGSxx

    • ImKarn23 profile image
      Author

      Karen Silverman 3 years ago

      Thank you so much for your concern, Audrey and Kathryn!

      I'm doing amazing well, thanks!

      HUGS to you both!

    • Kathryn Stratford profile image

      Kathryn 3 years ago from Manchester, Connecticut

      I don't think I have heard of this, so I am happy I read it. It's awful what you had to go through to be diagnosed! Sometimes worrying about something could be worse than the actual condition, or at least make it worse. Stress is not a good thing.

      I love your casual style of writing. It's not bland textbook style, although it has enough facts to feel like I have learned something. And sometimes hearing about someone's personal experience seems so much more "real" than reading a list of possible symptoms from a book.

      I am glad that it didn't turn out to be fatal, and I hope you are managing it well.

      Have a fabulous week!

      ~ Kathryn

    • AudreyHowitt profile image

      Audrey Howitt 3 years ago from California

      I don't know how I missed this Leslie--what a traumatic time for you--hope you are still doing and feeling well!!

    • profile image

      dreamseeker2 4 years ago

      I'm sorry you had to go to such pain and agony just to find a doctor who really cared enough about you to get to the core of the issue. Wow! How scarey that must have been!! My prayers and thoughts will be with you. I'm sorry for not getting to this hub of yours sooner, to be made aware of your dilemma. Thanks for sharing it with us, so we could all be aware of symptoms to look out for too. Take care hubber friend, from those of us who care...which I do too. : ) I am happy to hear it was benign.

    • ImKarn23 profile image
      Author

      Karen Silverman 4 years ago

      @Livingsta: Thank you sweet friend! Your concern touches my heart!

    • livingsta profile image

      livingsta 4 years ago from United Kingdom

      Hi Imkarn, hope you will feel better soon. I have not heard about this before. Sending you hugs and will be praying for you.

    • schoolgirlforreal profile image

      schoolgirlforreal 4 years ago from USA

      Yeah I'm glad my doctor finally listened to me too.

      You're right about me having a lot of emotions. It's extremely painful at times but also good at other times. Being the baby of the family, I guess it's my job to be super affectionate, loving, etc.

      Glad you're doing ok.

    • phoenix2327 profile image

      Zulma Burgos-Dudgeon 4 years ago from United Kingdom

      Wow! That is one busy doctor.

    • ImKarn23 profile image
      Author

      Karen Silverman 4 years ago

      @Phoenix2327: Welcome to Canada? Sigh...

      nah - it's not usually THAT long a wait, but apparently - THIS kind of specialist is rare in these here parts - only one in my entire province of 1.4 million peeps..

      nephrologist..

    • phoenix2327 profile image

      Zulma Burgos-Dudgeon 4 years ago from United Kingdom

      Glad to hear you're handling your condition in your own, inimitable style. Why such a long wait for the specialist?

    • ImKarn23 profile image
      Author

      Karen Silverman 4 years ago

      HI Docmo! Really nice to see you here - too bad it too a freaking disease to do it! LOL..( you know you can't come here without my giving you a hard time..lol)

      Listen - i've been taking D-Mannose - which 2 doctors have now told me that they've never heard of! I've still got SIX MORE MONTHS to wait for my appt with the nephrologist, but - i've had NO infection symptoms since i started..

      they wanted to put me on a low-dose antibiotic but - this is working better than any anti biotic ever did! I take it - and a week later - it's back..

      sigh..

    • Docmo profile image

      Mohan Kumar 4 years ago from UK

      Thanks sharing this in your own inimitable style. As you say MSK - though thankfully rare- is a condition that can predispose to kidney stones. While not all renal stones are due to MSK those with MSK tend to have stones much more often. High fluid intake (water), avoiding too many supplements like calcium and too much red meat does tend to help. I've got a few patients that I diagnosed after noting the arrival of their stones in their forties and the frequency of infections. While one cannot treat the MSK directly it is good to know to ensure appropriate precautions taken to avoid repeated assaults by stones and infection. Your journey to diagnosis says it all! ( cough- I am a listening Doctor, btw - cough)

    • ImKarn23 profile image
      Author

      Karen Silverman 4 years ago

      @Rosie: oh my goodness - i thought you knew for sure! lol..

      ah well...it's not like you don't have your own issues to distract you, my friend - you are not allowed to feel badly on my account! Considering what i thought it was - THIS i can handle, trust me..

      You have a good heart and a deep soul, Rosie - it's why you 'feel' too much sometimes..I'm so happy that your doctor finally listened to you(Grrrrrrrrrr@Doctors)

      love youxx

    • schoolgirlforreal profile image

      schoolgirlforreal 4 years ago from USA

      Wow.-. .-.-.-.:[ o m gosh I really as you know don't or haven't been reading much until today! I came out of my depression=I hope!!!! Buttttttt o m gosh....and you have to bleed and suffer and have pain...and kidney stones for the rest of your life??

      Wow...yeah you mentioned once in a message long time ago, I thought you were joking...not sure why---how could anything like this happen to the Lovely Luscious Lively Laughy Loveable Leslie! Noooooo

      Wow,,,,,,I've been behind things.

      Well now...I'M backkkk..........

      I hope for my sake, and yours, ;) kidding that I stay focused from now on!

      Thanks sooooo sooooo much for being caring/supportive/loving when I was sick. I did it! Me too! After being a squeaky wheel (and having undergone what I won't mention) I got my doctor to give me (the best PMDD med! FINALLY!!!) GOLLY it takes a lot of squeakin and I'm glad you're ok!

      Omg I'd miss you terribly! :[ Stay well hugs love etcetera

      So um yeah

    • ImKarn23 profile image
      Author

      Karen Silverman 4 years ago

      @Dearh61: hello again 'dear'! lol..

      listen - there are two sponge kidney groups - one has about 100 people in it and one has about 700...

      i joined both!

      hugs back hon, but - not too too tight!

      (btw..i was once given suppository pain killers for stones which were better than any iv they could hook me up to - also - instant..

      would you like the name of those as well - i have several left..

    • profile image

      dearh61@msn.com 4 years ago

      Thank you for your reply Leslie .....yes plz do let us know how the D-Mannose works!thank you so much for letting people know about this .After following up on your story ,I added the group to my facebook page !Actually giving birth to my two children was less painful then the stones!All that agony,pain ,pushing and all you get for your efforts is a hard stone!Geezzzz ......Maybe we should start a new business ,kidney stone jewellry ,lol.....I send best wishes to you as well !big hugs

    • ImKarn23 profile image
      Author

      Karen Silverman 4 years ago

      @Deanna: Deanna - i am so sorry for your PAIN - only those who have experienced even ONE kidney stone can understand..(just like childbirth..)

      I have started a natural supplement called D-Mannose - i've only been on it for 4 days, but - i'll let you know how it goes if i can reach you!

      i read about it on the medullary sponge kidney group page...

      i wish you the best of luck and sending good wishes!

    • profile image

      deanna 4 years ago

      I started an endless trip back and forth to hospital for treatment of kidney stones when I was 21 years old .I am now 51,and it wasnt until about 8 years ago that I was told I had a medullary sponge kidney .As I am writing this ....I am now trying to pass a stone .....I have passed so many stones I could pave a city block ,lol....I have felt so darn frustrated dealing with this ,but what can one do?One day at a time ...right?Hang in there ....I know your pain ....

    • ImKarn23 profile image
      Author

      Karen Silverman 4 years ago

      @CDR: Hi, there! You're absolutely right - d'uh!

      Sadly - it is bilateral...

      i've been great since i was diagnosed - thanks for caring!

    • profile image

      CDR 4 years ago

      Thank you so much for posting this. I had not heard of this condition before either. One note is that unilateral means it's only on one side. Bilateral conditions affect both kidneys. Hopefully, your condition is really unilateral.

    • ImKarn23 profile image
      Author

      Karen Silverman 4 years ago

      @Jackie Lynnley: Thanks for the suggestion, my friend - but - i've already ordered something that's supposed to help..

      it's called D-mannose - and it's supposed to stop infection - which i am plagued with..

      they (the DRS) want to put me on long-term low-dise antibiotic, but - i'm gonna try this first!

      Thanks so much! I am grateful for your concern..

    • Jackie Lynnley profile image

      Jackie Lynnley 4 years ago from The Beautiful South

      Wow I have never heard of this either. Kidneys are scary though and can act up from so many things, I mean normal kidneys. Taking blood pressure meds, tylenol etc that can effect the kidneys I was having pain in my sides thinking that was probably it, especially due to the fact I never drink enough fluids as I should, too. So I did some research and came up with celery seed being a good counter action against these medicines and I have found for me it is true. I just eat it on jelly toast if I forget to sprinkle it on food. Can't say it will help you but it could be worth a try. If I forget it a few days I get a little catch or pain in my side to remind me to use it again.

      Do hope you find something to help it. GBY.

    • ImKarn23 profile image
      Author

      Karen Silverman 4 years ago

      @Mary: OMG, girl - we could talk!

      In fact - stones have a great deal to do with this disease! There are pictures of kidneys being opened up and STUFFED FULL of stones - like HUNDREDS!

      i had my first stone at 19 - and in 2004 in Los Angeles - I ALMOST DIED from one getting stuck in the tube AFTER an attack - whereas i thought it had passed.. After a month of not knowing and feeling....odd - i wound up in the ER in LA with a 104 fever and my whole system shut down! They had to operate - i went home in a wheelchair with a 10" stent and had to find a specialist to remove it..

      interestingly - when i had a kidney function test after - it was 99% - and i haven't had an 'attack' in about 3 years now (touch wood)..

      But..MSK has a lot more to it than stones...there's a 'group' on FB that i've joined - and - it scares me! Whateva' - it's SO much better than the alternatives!

      i'm SO sorry about your terribly experience my dear! It must have been terrifying for you!

    • mary615 profile image

      Mary Hyatt 4 years ago from Florida

      When I first began to read this I thought : I'll bet she has kidney stones!!! Guess they ruled those out...

      I never heard of this kidney disease. How scary this must have been for you trying to get diagnosed.

      I lost a kidney due to stones. I wasn't even aware I had one until it destroyed my kidney (wrote a Hub about that experience).

      Good luck and stay well, OK?

    • ImKarn23 profile image
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      Karen Silverman 4 years ago

      @Rolly: Right back atcha, my dear friend!

    • profile image

      Rolly A Chabot 4 years ago

      Ever think you could get rid of us ... we love you too much girl to let you go that easy.... Good to have you back....

      Hugs and much love

    • ImKarn23 profile image
      Author

      Karen Silverman 4 years ago

      @Bill: Hey there you! SO glad to see you here in my hub-corner - safe and sound!

      Keep zig-zaggin' my friend, and - change your routes!

      love yaxx

    • web923 profile image

      Bill Blackburn 4 years ago from Twentynine Palms, California

      I just dropped in to see what condition my condition was in! Hunted by bikers and street gangs but I'm still kickin and feeling younger by the minute. Sure am glad though that I don't have to contend with this Catchie Ritchie disease because I don't know if I'd survive the odds. Nice catching up with you Leslie and this was as usual a great hub. Catch you on the run and do take care Leslie. May my luck not wear off on you these days!

    • ImKarn23 profile image
      Author

      Karen Silverman 4 years ago

      @MizBejabbers: My DEAR! I am SO sorry to hear about your son's problems! That sounds very scary! The rarer the problem is - the harder it is to find a doctor who KNOWS anything! As a mom - you know what i'm talking about..My daughter was diagnosed with type 1 Diabetes when she was 10 - and THAT"S one of the biggies..

      Sadly, kidney issues usually aren't 'money makers' - unless theres dialysis involved of course..

      VERY interesting - but also quite disconcerting - about YOUR and your SONS horseshoe kidneys!

      I hope we're ALL OK!

      Take good care, my friend!

    • MizBejabbers profile image

      MizBejabbers 4 years ago

      I’ve been rockin’ along reading your great poetry, and then I came across this! Gosh, I don’t know what to say, except that I am glad they found your problem – and you are getting treatment. I’m also glad it isn’t the Big C! What is with all these rare kidney problems that seem to be cropping up not-so-rare nowadays? I had never heard of MSK, but my son has HSP (Henoch Schonlein purpura), a disease that affects the kidneys and can put people on dialysis. The scant information I find on it says that it can be triggered by an upper respiratory infection, but he doesn’t recall having one prior to his breakout.

      First the body breaks out in purple spots and lesions that look like ringworms, then blood appears in the urine and sometimes in the intestines. He went to our University Medical Center, and they had no clue what it was. They sent a biopsy to the CDC thinking is was a fungal infection since it looked like ringworms and the tests came back negative for fungus, positive for HSP. The so-called smartest bunch of doctors in town had never heard of it and had to hastily read up on it. The only known treatment for HSP is Prednisone, which in some cases effects a cure, and sometimes you die. The med center has been fooling around refusing to give him the Prednisone now for three years. My husband says that’s because they are a teaching hospital and want his cadaver for an autopsy. He also has kidney stones and they can’t use ultra sound to break them up because they are too close to the kidneys. He has been able to pass two of them.

      Several years ago I told him not to ever need a kidney transplant because I had only one kidney, called a “horseshoe kidney” and couldn’t donate one. He came back later and said he also had one kidney, and it was horseshoe. It is supposed to be rare, but genetics can do anything, I guess. Since they aren’t giving him any treatment, if anything happens to him, they are going to have one BIG wrongful death lawsuit on their hands.

    • ImKarn23 profile image
      Author

      Karen Silverman 4 years ago

      @Dennis....me neither! it's never happened...

      (maybe - i can PAY to get out of jail? now that they're, ya know - a PUBLIC company...grrrrr...)

    • pagesvoice profile image

      Dennis L. Page 4 years ago from New York/Pennsylvania border

      How the heck does a person get blocked from sharing on FB? I never heard of such a thing.

    • ImKarn23 profile image
      Author

      Karen Silverman 4 years ago

      @Dennis...Hello, dear friend - and your caring means a great deal to me!

      Yes rare, but - too rare perhaps..there's not a doctor who knows what the hell it is..

      the urologist just passed me off to a....nephrologist - the ONLY one in the city- so - i could be DEAD before i actually get in to see him..haha...ha...(sigh..)

      i'm blocked from 'sharing' on facebook - i guess i was a bad bad girl, so - i probably won't write much till i'm finished my, um...TIME OUT! love ya D

    • pagesvoice profile image

      Dennis L. Page 4 years ago from New York/Pennsylvania border

      You were most definitely on an emotional roller coaster. When not knowing what is actually going on and simply waiting for answers is torture. As a man I can tell you I had a kidney stone once and I thought I was giving birth to broken glass elephant.

      The main thing to take away from your ordeal Ms. L. is your condition is somewhat manageable. Plus, with only 1 in 5,000 - 20,000 people having this problem it only proves to your friends just how UNIQUE you really are.

      We...your loyal followers...are so pleased to see you back and "cracking wise" once again. This planet needs your wit, sarcasm and quick retorts to naysayers. We all missed you, but as I said on another of your hubs you have been as busy as a beaver churning out more hubs for us to enjoy. We adore you Ms. L.

    • ImKarn23 profile image
      Author

      Karen Silverman 4 years ago

      @Kidscraft: I believe i've mentioned how grateful i am - both for your concern and your great advice!

      I've posted a message in 2 MSK groups - asking about d-mannose and kidney stones...

      a naturopath also sounds like a great idea!

      thank you

    • kidscrafts profile image

      kidscrafts 4 years ago from Ottawa, Canada

      Hi Leslie!

      It seems it's quite common for people with MSK to have kidney stones so maybe some people in the group on FB might have more info about that. As you said, it seems that in that some people in that group use d-mannose so they know may be more about the limit of what you should or not use with kidney stones.

      I really wanted to tell you the "cautions" mentionned because I don't want you to aggravate your situation.

      The d-mannose is the sugar contained in the cranberry juice.... but I don't know how many litres of juice you have to drink to have the quantity of one pill!

      Maybe the nephrologist will know more about it and/or will be open enough to do some research about the d-mannose for you. As I said in a earlier note, the d-mannose is a sugar that we have naturally in our body so I don't know why the urologist didn't know about it.

      Your other option would be to consult with a naturopath (some of those people study longer that some doctors); may be you have some of your friends who have a naturopathic doctor. It's always good to have several opinions. Your health is precious.

      I wish you the best!

      Joelle

    • ImKarn23 profile image
      Author

      Karen Silverman 4 years ago

      @Kidscrafts: I can't thank you enough for all your help and great info!

      Sadly, i do get kidney stones - and i was really excited about the d-mannose..as i said - the urologist said he'd never heard of it..

      who to ask...

    • kidscrafts profile image

      kidscrafts 4 years ago from Ottawa, Canada

      Hi Leslie!

      Thi is the brand I found in my health food store and it's working well for me : http://bit.ly/YEbtWA

      In the "Coautions" section it says the following : "Consult a health care practitioner prior to use if you are taking blood thinners or have a history of kidney stones. Consult a health care practitioner if symptoms persist or worsen."

      As I don't have (I think) kidney stones I just took the d-mannose and it helped me.

      May be in the MSK FB group that you found on line some people can give you more advice on that matter because they live with the problem.

      Did you know that several plants help to dissolve kidney stones. So may be some herbal tea might help you on that side too. I took several herbal teas several years ago because of bladder infection (before I found the d-mannose)... they are not all the most pleasant for the taste but for me if it works... I'll take it!

      Good luck with the nephrologist! I really hope that he will be able to help you!

    • ImKarn23 profile image
      Author

      Karen Silverman 4 years ago

      @Thumbi7: thank you dear! i live by the motto 'it's either laugh - or slice your wrists' :)

      sooooo...i laugh, ya know..

      NOBODY's heard of this disease - it's beginning to frighten me...

      i've now been passed onto a nephrologist - i'm praying he's heard of it..

      Thanks for caring

    • thumbi7 profile image

      JR Krishna 4 years ago from India

      Again I am amazed at your sense of humor. I have not heard of this disease inspite of being in health profession.

      Thanks for educating me on this

    • ImKarn23 profile image
      Author

      Karen Silverman 4 years ago

      @Teaches12345: No worries, my friend - i didn't send out 'notices'..lol..

      this was written AFTER the fact - or at least - after the worst part - the worrying..

      I'm fine, thanks for caring - only the good die young..

      lol

    • ImKarn23 profile image
      Author

      Karen Silverman 4 years ago

      @NellRose: OMG, I've NEVER heard of such a thing either! Kidneys seem to be like KIDS - always getting into some kind of trouble!

      Also - they never seem to run out of, er - piss 'n vinegar...(sorry).

      So You've never had a kidney problem since getting turned right again? 'LUCKY' you..

      It's crazy but sine this has been going on - my aunt has told me of TWO people she knows who had kidney cancer and had kidneys removed..

      yikes..

      i've also read where kidney cancers are becoming MORE prevalent..

    • ImKarn23 profile image
      Author

      Karen Silverman 4 years ago

      @Kidscrafts: I'm ordering d-mannose - is there any specific type you recommend?

    • teaches12345 profile image

      Dianna Mendez 4 years ago

      Oh my, Leslie. I was not aware of your condition. So sorry I didn't catch this notice. I am keeping you in my prayers, dear one. Maybe I didn't see the answer, but what did the doctor prescribe for you? I have never heard of this before, but glad that I am now aware of the condition. Hope you are much better now.

    • Nell Rose profile image

      Nell Rose 4 years ago from England

      Hi Leslie, those darn kidneys come up with all sorts don't they? glad to see its a benign thing, but that must have been scary. I do know where your coming from on this, at 33 years old I suddenly collapsed in a heap on the floor clutching my stomach and thinking someone had just shot me with an arrow! the doc in his wisdom said, hey you got an infection! long story short, I eventually got to the hospital, where they found out I had an upside down kidney! had since I was born, and all the tubes going in and out of the darn thing were not working, so I was filled with water! bit like a sloshy balloon! had the op, took it out, turned it back up the right way and stuck it back in, but like you never even heard of it before! so I am glad you are okay, and take care, nell

    • kidscrafts profile image

      kidscrafts 4 years ago from Ottawa, Canada

      Hi Leslie,

      I am sorry to hear that the urologist couldn't help. That means you have to wait longer before seeing another specialist.

      I am not suprised that the doctor never heard of d-mannose. Unfortunatelly, conventional doctors don't know those types of remedies that could help patients to avoid the use of antibiotics.

      That's why I have a conventional doctor and a naturopath. And my conventional doctor doesn't know that I have a naturopath. When you have a naturopath, you have almost no choice that to have a conventional doctor because they are not allowed to order tests or those tests will not be covered by health care for example.

      I think the new generations of doctors have to take some courses now about being more open toward naturopathy.

      Good luck with your next steps to find the best solution(s) to help you with MSK!

    • ImKarn23 profile image
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      Karen Silverman 4 years ago

      @Beingwell: Hello Rizza - so nice to see you! Focusing on the good things is what life's all about - i think..

      somebody once told me that it's not what life hands you - it's how you deal with it that counts..

      thanks for stopping by

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      Karen Silverman 4 years ago

      @Sueswan: You and i both, Susan - just read my comment before this! it's like you read my mind - or vice versa!

      thanks for visiting and thanks for sharing!

      Both appreciated!

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      Karen Silverman 4 years ago

      @Paula! OMGOMGOMGomgomg...i had NO idea! WHY didnn't somebody tELL ME???

      I am so so so so so so so sorry my dear sweet kindhearted generous friend! I can never make it up to you fornot being there, but - please know that i would have had i known! i wasn't around much either..

      what can i do to make you smile? if only for a moment!

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      Karen Silverman 4 years ago

      @Kidscrafts: Sigh..he was NOT able to help me! He has passed me on to a...nephrologist - for a few more tests..

      i asked him about the d-mannose - and he said he's never heard of it

      yet - when i check the MSK fb group - several people there RAVE about it..

      Hmmmmmm...

      i hate mainstream medicine....or doctors..

      Thanks for caring

    • beingwell profile image

      beingwell 4 years ago from Bangkok

      Hello les! I hope you're doing fine now. It's good though, that you're still focusing on the good things! Sharing this hub... after I finish this vid. haha!! Thanks for sharing it.

    • profile image

      Sueswan 4 years ago

      Hi Leslie,

      Glad to have you back! I don't have much faith in conventional medicine. We need more doctors like Dr. Tom Bowman

      Take care , Sue

      Voted up and sharing

    • fpherj48 profile image

      Paula 4 years ago from Beautiful Upstate New York

      Oh Leslie...I'm sorry that word did not reach you. Yes, I suppose we could say I'm taking a "break." I lost my sweet husband, quite suddenly on Feb. 11th. massive coronary....took him instantly, as he sat in his lounge, watching a football game. We spoke one moment about dinner.....10 minutes later, I went to talk with him and he was gone, Leslie.

      Don't know when I'll be back as full-time as I always had been......much to do, honey......Love ya, Paula

    • Deborah Brooks profile image

      Deborah Brooks Langford 4 years ago from Brownsville,TX

      Hello Leslie.. I am so glad they have found out what is wrong with you and you are here with us again.. so glad to see you my friend..

      many blessing my sweet friend

      Debbie

    • kidscrafts profile image

      kidscrafts 4 years ago from Ottawa, Canada

      I hope that your urologist will be able to help you!

      The d-mannose I have is from UTI Cleanse (TM). I buy it from a health food store but you can buy it on line too. In fact the d-mannose is found in the cranberry juice and that's why people suggest to drink it in case of bladder infection. But with the d-mannose tablets, you get a lot more; I suppose that to have as much with the cranberry juice you need to drink a lot.

      I don't know if homeopathy or acupuncture could help for your specific problem. I always like to see the different options there are for one specific health problem.

      I wish you the best with your visit with the doctor tomorrow! Take care!

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      Karen Silverman 4 years ago

      @Kidscrafts: Hello my friend - thanks so much for all this helpful information..

      I've written down the therapy you're suggesting and when i see my urologist tomorrow - i'll ask him about it..

      have YOU heard of d-Mannon?

      i'm asking about that as well - AND - looking both up, cause - to be honest - i just don't trust Doctors..

      also, i've asked about it on MSK fb pages...

      thanks for caring!

    • kidscrafts profile image

      kidscrafts 4 years ago from Ottawa, Canada

      Hi Leslie!

      Do you know that Medullary Sponge Kidney has a diminutive? MSK!

      I found this web site that seems to indicate that you could have some help with Micro-Chinese Medicine Osmotherapy :

      http://www.kidneyservicechina.com/back-pain/449.ht...

      May be it's worth exploring?

      I read that marshmallow root tea is excellent for the kidneys as well.

      I hope that you don't suffer too much because of your problem.

      Take good care of yourself!

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      Karen Silverman 4 years ago

      @JO: Good morning, Jo - please don't be sorry - very few were aware that anything was going on..Ya know - a girl doesn't want to call wolf when it's only a fairly friendly puppy!

      i'm not the least bit surprised it's 'something rare' - could i tell YOU some stories, girlfriend..lol..

      the only reason i can smile - is because i should already be dead - more than twice!

      Have a great day - enjoy every moment - the good the bad and yes- even the ugly!

    • bravewarrior profile image

      Shauna L Bowling 4 years ago from Central Florida

      Please do, Leslie!

    • phoenix2327 profile image

      Zulma Burgos-Dudgeon 4 years ago from United Kingdom

      Hello, Leslie. Yes, the beat goes on. Wishing you and your aunt all the best. Please keep us posted.

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      Karen Silverman 4 years ago

      @Escobana: You are a very special woman, dear Esther - Your aura is strong and true - i have felt your 'vibes' almost from the moment we 'met'!

      It's a pleasure knowing you - even if it is from a continent away!

      Hugsbackachaxx

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      Karen Silverman 4 years ago

      @SheriFaye: Lol..you know what they say, eh? It's either laugh - or slice your wrists..

      HAHAHAHAHA..

      HAHA..

      (sigh...LOL..)

    • ImKarn23 profile image
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      Karen Silverman 4 years ago

      @Girishpuri: Thank you my friend! You too!

    • ImKarn23 profile image
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      Karen Silverman 4 years ago

      @Bravewarrior: i DO know, sweet friend - thank you so much!

      now what happens? First - the Urologist has to come back from va-ca - and then - he has to tell me if he's equipped to deal with this disease - and if not - who is..

      i'm hoping there's an alternative if he's incapable for some reason...

      i'll keep you in the loop, Shauna!

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      Karen Silverman 4 years ago

      @Kashmir: Welcome K, Thanks for dropping by and adding your good karma to the amazing mix!

      I am blessed!

      Hope your Easter was perfect!

    • ImKarn23 profile image
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      Karen Silverman 4 years ago

      @Xstatic: You and me both, X - ya know? lol..

      based on the information i've been garnering from the groups i've joined - a good doctor is KEY!

      hoping we have such an animal near where i live..

      sigh..

      Thanks for caring!

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      Karen Silverman 4 years ago

      @Phoenix2327: Hello, dear! thanks so much for your concern!

      Yes, it's frightening - as far too many people know either firsthand - or second!

      Today..i am waiting to see why my aunt was called back for another mamogram and a ct scan..

      and now - a biopsy..

      and..the beat goes on - if life doesn't kill ya - nothing will..

    • ahorseback profile image

      ahorseback 4 years ago

      I think you need a really nice lower back massage ! I uh .....I know how to do that ....hehehe .

    • tobusiness profile image

      Jo Alexis-Hagues 4 years ago from Bedfordshire, U.K

      Imkarn, only you could take something that is potentially a dangerous health condition and make us smile with you, you are truly awesome.

      Sorry I wasn't aware of your illness, you mention in a comment that you were a bit under the weather, but I never imagined it was this serious. I've been an ICU nurse for more years than I care to remember, although I'm aware of renal dysplasia MSK is new to me.

      Trust you to get something rare :).

      I'm so glad to have you back, take care of yourself, lots of hugs from Luton coming your way.

    • girishpuri profile image

      Girish puri 4 years ago from NCR , INDIA

      Karen, This is good to see you well and the problem manageable, God bless. Take good care of your self.

    • ImKarn23 profile image
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      Karen Silverman 4 years ago

      @Btrbell: Hello, Randi - you're right - the not knowing just plays with your mind - no matter how much you know it - or try to not allow it! i must admit - my heart was beating hard walking into that hospital - it made it...final - i might have very well found out some very bad news..

      while i'm not exactly thrilled about what i'm learning about this disease - i'll take it ALL DAY LONG - over the alternative..

      thanks for caring - you're a sweetheart!

    • ImKarn23 profile image
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      Karen Silverman 4 years ago

      @Ananceleste: YIKES! i am sooooo sorry for your sister - and you - and your family! i feel sick at how disappointed and scared you all must be!!!

      Listen - i'm going to send karma - every day - and get a bunch of other folks to do the same!

      What's your sister's name? We need to get her better!!!

      and please - contact me on facebook any time!

    • ImKarn23 profile image
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      Karen Silverman 4 years ago

      @The CleanLife: Thanks so much Mark! People need to know that there are other options to CANCER - which is where google and bing and and and - points you when the only symptom is blood..

      Your stopping by means a lot!

    • ImKarn23 profile image
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      Karen Silverman 4 years ago

      @Alwaysexploring: Hello dear! You DID tell me that, but ya know..lol

      on the other hand- i can almost SEE the visual you paint re; nuclear attack..

      LOL..

      (the reality is - i hope i go with the first, ya know - WAVE...)

      love ya gf, thanks so much for the support!

    • ImKarn23 profile image
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      Karen Silverman 4 years ago

      @Mhatter99: Hi, M - i know very well that YOU know - only TOO well!

      sadly...

      be well, my friend..

    • ImKarn23 profile image
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      Karen Silverman 4 years ago

      @JackiePierce: Wow...i musta been sick! LOL..AWESOME to see you here Jackie - and i'm hoping it doesn't take another cancer scare to get you back again!

      (sigh..you're not even seeing this - are ya? )

      LOL...love ya!

    • ImKarn23 profile image
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      Karen Silverman 4 years ago

      @Nellianna: You are one of a very few role models for me, Nellieanna! You make me want to be better...stronger..more capable!

      19 years? LOL..(love the exact number) - and - i'll do my bestest to stick around with ya - and for ya, my friend!

      Life IS a terminal disease - let's enjoy every moment we have!

    • ImKarn23 profile image
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      Karen Silverman 4 years ago

      @Aviannovice: You said it - a NAME is a very good thing! Thanks for caring!

    • ImKarn23 profile image
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      Karen Silverman 4 years ago

      @Marcoujor: Trust me, Maria - this is NOT what i thought i'd be writing about! I'm thrilled that it is, altho - the more i find out about it - the more i realize it's not exactly a walk in the park...

    • ImKarn23 profile image
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      Karen Silverman 4 years ago

      @Fpherj48: i have noticed your absence as well, Paula! I hope for no other reason than taking a break??

      I'm glad you made it back just in time to hear GOOD news...worry sucks, ya know? lol..

      genius? Puh-leez! (genius's scare me..lol..)..

      happy easter, sweet friend!

    • Sheri Faye profile image

      Sheri Dusseault 4 years ago from Chemainus. BC, Canada

      I love how you appraoch this with humor and I am so glad it is not the big C. I have found that in the mdical system you need to be you own advocate and good for you for doing so. The world needs more doctors like the one who went an extra mile for you. I wish you all the best with your health. Your upbeat attitude can only help. Thanks for sharing this.

    • Escobana profile image

      Escobana 4 years ago from Valencia

      Oh my dear Leslie! So happy to have you back and so happy for you to not have to worry about the big C anymore. I am very grateful to have found you here on Hubpages and I am very pleased to see you back in full energy.

      I tried sending out a lot of positive vibes and it was a such a wonderful moment when I saw your message on Facebook. A good message even though you have a condition. Yes you do, but you'll manage it.

      You'll manage anything in life because you're SUPERWOMAN!

      Big hugs and blessings from Esther:-) :-) :-)

    • ImKarn23 profile image
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      Karen Silverman 4 years ago

      @Picadilly: Hello there, Missy! Your concern and knowledge was immeasurable - thank you!

    • ImKarn23 profile image
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      Karen Silverman 4 years ago

      @ExoticHippieQueen: Yeah, eh - what's the, ya know - HURRY?

      lol..

      thanks for taking the time to stop by and leaving a hysterical (and sadly true) comment!

      Happy Easter, Hippie!

    • ImKarn23 profile image
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      Karen Silverman 4 years ago

      @HLPhoenix: Hola GOAH - now it's YOUR turn...sigh..

      i'm keeping my kidneys crossed for you tomorrow - they seem to have a lucky charm attached to them!

      thanks for sharing and thanks for caring!

    • ImKarn23 profile image
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      Karen Silverman 4 years ago

      @JayeWisdom: Thanks so much Jaye for taking the time to share!

      Wow - we do have a few things in common, my friend - i once waited a year for a diagnosis as well..

      i was too young to remember 'going thru' much of anything tho..

      ya know what they say: what doesn't kill us..

      blahblah..

      whateva! lol

    • ImKarn23 profile image
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      Karen Silverman 4 years ago

      @Carol7777: Lol..you are sooo cute! I love your comment - you know exactly waht i went thru!

      not many people knew, my friend - i don't like whining about what was - hopefully - nothing..

      but - when the tests kept coming back negative and the blood kept getting worse - i did start to become...concerned..'ya know?'

      lol

      thanks for caring!

    • ImKarn23 profile image
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      Karen Silverman 4 years ago

      @Rosemay: relief - that is exactly the word! So much relief and so suddenly that i crashed - pretty hard for a day or 2..

      i call it 'anti--stress - deal with needs to be dealt with and then - have the nervous breakdown AFTER the fact..lol

      Happy Easter to you, my friend!

    • ImKarn23 profile image
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      Karen Silverman 4 years ago

      @MyCousinMaureen: I hate to sound trite - but - i think YOU especially understand when i say: BETTER HUMOR THAN A TUMOR!

      i adore you - and you epitomize 'grace under fire' cuz!

    • ImKarn23 profile image
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      Karen Silverman 4 years ago

      @Bac2basics: Hello dear and thanks so much for your concern! You are correct - no one cares but - i already know this..

      i could tell you some stories that would curl your hair - (or straighten it if it's already curly..LOL)

      always do your homework - and question, question, question..push, push, push..

      no one else will

      xx

    • ahorseback profile image

      ahorseback 4 years ago

      Well you little brat ! I suspect your soo like me when it comes to doctors , " oh I'll get there eventually "....... you need a damned good spankin ! hey ----We love you you know ?

    • bravewarrior profile image

      Shauna L Bowling 4 years ago from Central Florida

      Leslie, as you know, I was worried sick. I'm relieved the diagnosis is NOT the BIG C. Now what happens? Can anything be done to stop the bleeding?

      Remember what I said about reducing the stress in your life... It certainly can't hurt!

      Love ya, my friend!

    • kashmir56 profile image

      Thomas Silvia 4 years ago from Massachusetts

      Hi my friend glad you are back and keeping a good positive attitude after this long journey before someone could tell you what was happen to you and what was causing it. Were are pulling for you and praying for you has well, hope you are having a wonderful Easter.