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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

      lovedoctor926 4 years ago

      Thank you for spreading awareness about this disease. I just voted No, I have never heard of this disease before. I was really concerned about you Leslie. Thank God for Dr. Tom Browman. There's nothing like a doctor who goes the extra mile for his patient's needs. That, I must say makes a big difference. I'm very happy to hear that the condition was beningn and treatable. I would have been taking a shit too! Lol. So the doctor is on vacation huh? just looveeeeeee how the healthcare system works. you could be dying and they don't give a hoot! Well, I'm glad that you're back...

    • profile image

      lovedoctor926 4 years ago

      Voted up useful & sharing. I am your first comment my friend. Wishing you a Happy Easter weekend:)

    • billybuc profile image

      Bill Holland 4 years ago from Olympia, WA

      Huge relief. I'm sorry I'm late to the party on this one. I somehow never saw any of your postings on Facebook and I feel horrible about it. Sending you belated hugs and love from Olympia.

      Now, where the hell is the video of Kenny Rogers and the First Edition singing "What Condition My Condition Was In?" Get it on youtube and put it on this hub, please. :)

    • DanaTeresa profile image

      Dana Strang 4 years ago from Ohio

      AWESOME - You and this hub. So great of you to share your experience in that Leslie style we all love. You present some great info here AND it is very encouraging to those out there looking for a diagnosis. Never give up. Keep fighting for you health and for the care you deserve....

      I am so very glad that you dodged the big C. Having had 2 close calls myself (cervix and esophagus), I know how scary that is.

      You are so sweet to mention me among your supporters. I wish I could have been there in person to hold your hand through all of this. You are my rock, or I should say geode (I will let you mull that over).

    • MartieCoetser profile image

      Martie Coetser 4 years ago from South Africa

      Oh my gosh, Leslie, you poor thang! What an awful two month's roller coaster ride! You have all my empathy. But now that you know.... ye know. Not knowing is such a killer of the spirit. (For more than a year now I don't know what the reason could be for my constant pain. If I allow my imagination to take me for a ride..... just saying... I know what went on in your mind.... )

      I love the way you've described your suffering - with lovely humor. This is what makes you so beautiful.

      Sorry I was not there to support you during the past 2 months. But ye know, we cannot share our business with ALL our friends. Just remember that friends are like stars. Even when you can't see them, they are there.

      I wish you the best ahead. Effective medication, galore. I know one thing for sure, no two things: One day we'll all be dead, and YOU will never lose your sparkle.

      Lots of hugs to you!

    • Eiddwen profile image

      Eiddwen 4 years ago from Wales

      As always a brilliant to-the-point hub and thank you so much for mentioning me Leslie !!I mean this as you are one of the greatest writers on here !!I love your spirit ;your matter of factness and that sincere heart of yours always so kind and caring.

      I know that this hub will help so many and teach us all to be tuned in to every aspect of our bodies ; our health is paramount!!!

      I am so glad that this was not as serious as feared and I wish you a speedy recovery my very dear friend.

      Havea wonderful Easter weekend and here's to so many more hubs for us both to share on here.

      Lots of love and hugs from my little corner of Wales.

      Eddy.

    • lovemychris profile image

      Yes Dear 4 years ago from Cape Cod, USA

      glad you're ok Im. Can't keep a good one down ;0)

    • FyrFytr234 profile image

      FyrFytr234 4 years ago

      First of all...you're amazing! I'm glad it turned out as well as it did and wasn't the...ya know...big C. Secondly...it was my pleasure to be there for you and help. That helped me as well, more than you can imagine. Welcome back!

    • profile image

      SilverGenes 4 years ago

      I'm so glad you got a diagnosis finally and that's it's -ya know - manageable! You found a really good guy in the ER that day...wow. Big hugs from the coast and it's great to have you back!

    • profile image

      Vickiw 4 years ago

      Hi dear friend Leslie, what am I, chopped liver (or kidneys)?! Hope you noticed my best wishes to you on your spanking Hub! So glad you wrote this - sounds very uncomfortable and worrying, but you wrote about it in your usual feisty, lovely way! It was wonderful you found Dr. Bowman in your time of crisis. Thinking of you,with my heartfelt wishes that you will feel better with treatment. Love and hugs, Vicki

    • Wrath Warbone profile image

      Terry Chestnutt 4 years ago from Cleveland, Ohio

      Hi, Karn. I wondered if something was wrong recently. I am sorry I did not ask but I am very glad you have good chances to maintain and that your loved ones supported you. Best of success with symptom management. Great tune. One of my favorites from my teen years. Thanks. And God bless.

    • Deborah Brooks profile image

      Deborah Brooks Langford 4 years ago from Brownsville,TX

      Leslie... It's my best-est girlfriend ever... I am so excised to see you.. I knew something like this couldn't keep you down.. You are the bravest and strongest woman I know.. If you only knew how many prayers have flew up to heaven for you.. I LOVE I LOVE I LOVE YOU!!!!... My dear sister and friend.. many blessings for you.. Always

      Debbie

    • Deborah Brooks profile image

      Deborah Brooks Langford 4 years ago from Brownsville,TX

      Oh and one more thing.....Oh yes girlfriend.. its time to PARTY!!!!

      Your place or mine?

      lol

      love you

      d

    • bac2basics profile image

      Anne 4 years ago from Spain

      Hi ImKarn. Oh I am so pleased that you have now got a diagnosis and at least know what`s going on, it must have been very very scary as well as all the rest. You mentioned on a comment recently that you were going in for tests and I could tell it was worrying you. What really pee´s me off is the way it seems that no one bothered at all to put your mind at rest or hurry up an examination, thank god in the end you came upon someone who actually took the trouble and went the extra mile to help you. Big hugs for you dear, and now at least you can cope with the symptoms knowing it´s not the big C, what a weight off, phew .

    • profile image

      Your cousin Maureen 4 years ago

      Leslie - You make me so proud of you. This is a fabulous and informative article, written with charm, care, humor. (about an almost unknown disease) I came late to knowing about your almost "Big C" and I was so worried about you, but finding out it was not the " Big C" was such a relief.

      I love you muchly!!!!

    • Rosemay50 profile image

      Rosemary Sadler 4 years ago from Hawkes Bay - NewZealand

      I love your spirit and the way you have shared your experience. There's no keeping a good gal down :))

      What a relief to find it wasn't the big C, but two months of worrying would have been such a terrible strain on you. The 'not knowing' makes everything so much worse, thank goodness for the doctor who went that extra mile.

      Wishing you all the best with the symptom management... Oh and Happy Easter

    • carol7777 profile image

      carol stanley 4 years ago from Arizona

      I had no idea that you had any problems but I am glad you finally know what has been causing your discomfort and serious symptoms. The medical profession today is in a hurry for nothing except to get you out of the office quickly. Doctors are always on vacation when you need them. We had a friend misdiagnosed which turned out to be a deadly brain tumor and he is short time...All the doctors along the way were never there for him..and put him off etc. I can imagine how you felt..waiting and worrying to see what was going to transpire..To me the waiting game is not at all fun and the worry you had to go through...I am so sorry. I can feel your angst. Now we know about a new condition..and knowing you ...you will live with it especially since you finally know what it is ..Look forward to more writing and so glad you can now go to be happier.

    • JayeWisdom profile image

      Jaye Denman 4 years ago from Deep South, USA

      I'm glad you finally encountered a doctor who was willing to play detective and find out what was causing your symptoms. They were, I'm sure, scary enough without failing to get a proper diagnosis for so long.

      I've been lucky enough in my life to meet three doctors like that (who made up for the blase types). I've got several unusual-to-rare/incurable disorders of my own, and, with the first one, waited more than a year to be diagnosed and treated. Although I was glad to finally know what was wrong, I went through the 'Why me?' phase. Then I learned to cope. Life sometimes throws us curve balls, but we adjust and life goes on...perhaps somewhat differently, but we're okay.

      I hope your condition won't worsen, Leslie, but you strike me as the type of person who can cope no matter what. Take care of yourself. We need you around here to enliven things and keep us thinking. Best wishes....Jaye

    • HLPhoenix profile image

      HLPhoenix 4 years ago

      Dear Lesl... what a big whew!!! it was when you finally found a Dr. who had an hunch and bothered to follow it through... imagine, using a book! I know how relieved you are that you 'only' have a congential disorder that will be with you for life, with all those horrible symptoms. Still, like you my relief is palpable that it was not the Big C.

      This is a wonderful Hub, written so humerously about such a terrible experience... this one might even be noticed by the powers that be. :) Everyone needs to share this... who knows some Dr. might even read it and learn something.

    • profile image

      ExoticHippieQueen 4 years ago

      WELL! I'm so, like ya know, HAPPY for ya, after learning that it wasn't the big C. I mean, doctors seem to be so, ya know, BLASE' when it isn't their kidneys or bladder at the front of the line, right? Wait six weeks for this, a month for that.....hey, what's the uh, HURRY? Very entertaining and informative article...........voted up, awesome and useful!

    • fpherj48 profile image

      Paula 4 years ago from Beautiful Upstate New York

      Miss Leslie! I, myself, have been MIA from HP for several weeks....so I was unaware of any of this. I got here just in time to hear the GOOD news! Every once in a while, I get lucky!?

      BRAVO!, Dr. Tom...my Hero of the week. Drs like him are so damned few and far between! Bless your heart...all that you've been through...but seriously, girlfriend?....what else would a rare gem like you have, but a RARE medical issue?

      Please, Leslie....you and Dr. Tom, or whatever specialist they hook you up with.....stay on top of thing thing! It must be quite a relief to finally KNOW. I swear, medical mysteries can kill us from the stress and concern, alone!

      Extremely educational...and I totally enjoyed your unique Leslie-Style of story-telling. You bring genius to HP. Have a Wonderful Easter Week-end......! UP+++

    • marcoujor profile image

      Maria Jordan 4 years ago from Jeffersonville PA

      Oh Leslie,

      Thank you for sharing this and really, thank you for being you... like no other. Missed you and sending you a gentle hug...Love, Maria

    • aviannovice profile image

      Deb Hirt 4 years ago from Stillwater, OK

      It is good to know that you are all right, that this is manageable, and now has a name.

    • Nellieanna profile image

      Nellieanna Hay 4 years ago from TEXAS

      Oh, Leslie!! I'm so relieved that it's not something even worse than it might have been, but what it is, is no picnic. All that unnecessary delay whine medics dragged their feet or stethoscopes or whatever, my gosh. Thank god for Dr. Tom Bowman. He should get a medal, though it's what doctors are 'sposed to do: take care of patients. GRRR on the others you saw who did noting useful!

      OK - now I just want to focus on YOU! Thank goodness you know what it is and what kinds of things to do for it - and you have someone in Dr. Tom on whom you know you can rely.

      I can't believe there are no suggestions to do everyday ordinary things that do keep kidneys healthy, - to help you in relieving this condition's progress; - ya' know: - drinking plenty of plain clear water to help flush out the kidneys and avoiding liquids laced with other stuff in them which make problems for kidneys to have to handle, - coffee, tea, sodas, anything with junk in it, and so forth. Fresh lemon juice in water is helpful to kidney health and can be rather pleasant too.

      But with the general lack of any kind of identification of symptoms (with out already knowing what it is sheesh!) - it's not too surprising that there are few if any practical suggestions one can set up and practice from now on!

      A history of kidney stones and other kidney complications suggests that perhaps your everyday stuff could be stepped up to help - and wouldn't hurt.

      I tell you what, my dear. . . I'm planning to be around at least another 19 years and I will not be pleased if you futz around and neglect any possibilities to be there too, happy and healthy as I'm gonna be!! Got it?

      I love you, Leslie - and really feel this anguish for you. Wish there were anything - something - I could do to help relieve it, other than fuss at you to take better care of yourself!

      I love your comment that LIFE shortens life - haha - so true. I once wrote "Life is a terminal disease! - EPIDEMIC!" But the point is to make it all as good as possible while playing out!

      Hugs and much love.

    • ananceleste profile image

      Anan Celeste 4 years ago from California

      My dearest friend;

      I am so glad that it was'nt the big "C". From a kidney disease sufferer to another, it could have been worst. My sister (she is 34) Have had 3 operations in the last month just to repair a huge double (both kidneys) blockage.

      She just texted me as I am writing this to you, that the last operation failed. Now they have to catheterize both kidneys again. Please sweetie take care of yourself. We need Imkarn23 to keep life bearable.

      Love Anan

    • btrbell profile image

      Randi Benlulu 4 years ago from Mesa, AZ

      Leslie...First, I am so sorry you have had to go thhrough this. It's so scary, especially the not knowing. As they say, it's the not knowing that kills us. I wondered why you asked us to wish you luck on fb. Now I understand! I wish you continued luck andf while I understand there is no true treatment, I wish you good care and management. Many, many kudos to Dr. Thomas Bowman, a rare doctor and man. I have been fortunate to meet a couple like him throughout the years and consider myself blessed.

      Take care of yourself, dear Leslie.

    • picadilly profile image

      Priscill Anne Alvik 4 years ago from Schaumburg, IL

      Missy L. , always have your back in words, thoughts and prayers!!! You are an amazing woman, healthy!!!! Something so powerful to celebrate! I loved being part of your journey!! Love mc xox

    • profile image

      Jackie pierce 4 years ago

      Leslie. Sorry to hear about what you have been going through the last couple of months. I am glad you finally got a doctor who was able to diagnose the problem, and that it was not cancer. I am also glad that you at least know what you are now dealing with. All my love to you and stay healthy. Jackie

    • Mhatter99 profile image

      Martin Kloess 4 years ago from San Francisco

      I could rant and rave about doctors and my condition... But I'm glad you are alright. But, friend, keep in mind what keeps me positive.

    • phoenix2327 profile image

      Zulma Burgos-Dudgeon 4 years ago from United Kingdom

      You poor babe, you must have been so frightened and frustrated. I'm so glad you finally found out what the problem was. Now you can take control of it. I'm so happy you're back with us again delight us with your wordplay and shine the light into the corners we'd rather not look at.

      Happy Easter to you.

    • kidscrafts profile image

      kidscrafts 4 years ago from Ottawa, Canada

      I am very happy for you Leslie that you have finally a diagnosis and you know what is going on. Just knowing, it removes some fears and you can start again to enjoy life without having that burden always present in your mind.

      What a blessing that you went to the emergency room and got that doctor! Some doctors really love their job and know what is their mission in life.... helping people to get better. Hurray for for him!

      As for your repetitive infection, you could try Natural D-Mannose; for me that product was a godsent because I also had a lot of those infections and I was getting tired of having to run see a doctor to have antibiotics. The problem with the antibiotics it distroys so many good things in our body that it's not a good solution either.

      You can find that product in health food stores; it's called UTI Cleanse.

      D-Mannose is a sugar. It's not an antibiotic or medicine but it helps your body to eliminate e-coli bacteria present in the urinary tract.

      D-mannose doesn't kill any of our body’s cells or disrupt our natural micro flora.

      And the D-mannose itself is processed and eliminated by our bodies very quickly. It travels through our digestive system and arrives into our bladder via the kidneys.

      The e-coli that was previously attached to the bladder wall and happily multiplying themselves in the bladder interact with the D-mannose often forming an even better bond with the D-mannose than they do with the bladder wall and become mobile and then it's flushed when we go to the washroom.

      It seems that we have some naturally in our body but often not enough.

      Since I discovered that product, I never used once any antibiotics! If I travel abroad, I always have a box with me. I find also that by not using any antibiotics for my bladder since several years now, my bladder is healthier. I think I had no "crises" where I had to use the D-mannose since more than a year.

      I hope that this tip will help you also in the health of your urinary tracks!

      I wish you the best of health!

    • ImKarn23 profile image
      Author

      Karen Silverman 4 years ago

      @Lovedoctor926: Good morning Doc! Yep - you'ze da first ta know - ya know? Lol..

      i agree - BOTH healthcare systems leave something to be desired - usually - a LIFE...(sigh..)

      Thanks for your care and concern, my friend - it meant a lot!

    • ImKarn23 profile image
      Author

      Karen Silverman 4 years ago

      @Billybuc: NO WORRIES, Bill - geez - i didn't trumpet it from the rooftops - 'ya know'? lol..

      i know you care and i appreciate the hugs - anytime at all..lol..

      and - great idea - the vid's already there!

      thanks!

    • ImKarn23 profile image
      Author

      Karen Silverman 4 years ago

      @DanaTeresa: Lol...thanks girlfriend! I KNOW you've 'been there' - far too many have - and far too many don't get such a relatively and comparatively GOOD diagnosis..

      i am grateful, trust me - and i wish you coulda held my hand - thanks for offering!

    • ImKarn23 profile image
      Author

      Karen Silverman 4 years ago

      @MartieCoetser: Yeah...i freakin' HATE the roller coaster, Martie - it literally makes me nauseous! (lol)

      i adore you and your support, my friend - thank you for such warm and caring words!

      Happy Easter!!

    • ImKarn23 profile image
      Author

      Karen Silverman 4 years ago

      @Eddy Thank you my friend - your words warm the cockles of my heart - and kidneys. (whatever the heck cockles are..LOL)..

      Hugs back atcha, Eddy, and - Happy Easter to you!

    • ImKarn23 profile image
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      Karen Silverman 4 years ago

      @Lovemychris: OR a bad one! Lol..

      Thanks for dropping in, LMC!

    • ImKarn23 profile image
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      Karen Silverman 4 years ago

      @Fyrfytr234: NO - You're amazing! (lol)

    • ImKarn23 profile image
      Author

      Karen Silverman 4 years ago

      @Silvergenes: Your kind words are much appreciated, my friend, and - ya know - THANKS FOR NOTICING!

      haha..

      hugsbackxx

    • ImKarn23 profile image
      Author

      Karen Silverman 4 years ago

      @Vickiw: my dear friend - clearly - you must have missed your name being mentioned?

      Please - check again..

      lol

      Thanks for caring!

    • ImKarn23 profile image
      Author

      Karen Silverman 4 years ago

      @WrathWarbone: Thank you, my old friend...(wellll - you ARE, aren't you? )

      LOL..

      hugs, Terry! Happy Easter!

    • ImKarn23 profile image
      Author

      Karen Silverman 4 years ago

      @DeborahBrooks: Deb..you're up to your armpits in your own life - and yet - you're there for me every step of the way!

      There's nothing i can say to express my gratitude! Love ya girlfriend!

      And - I don't care WHOS place it's at! ( you said you hated snow...lol)

    • the clean life profile image

      Mark Bruno 4 years ago from New Jersey Shore

      Leslie- I am so sorry to hear of what you have been going through. I never even heard of this before, but you are a strong lady and handle this well. Great hub Leslie and thank you for informing us about this. I hope you have a wonderful Easter my dear.

      God Bless you

    • always exploring profile image

      Ruby Jean Fuller 4 years ago from Southern Illinois

      Did i not tell you that nothing in this world was BIG enough to bring you down. It would take a nuclear attack, then after the smoke cleared, you would be cursing the attackers and looking for your computer to write a scathing report. All kidding aside, welcome back. Love ya Leslie......

    • xstatic profile image

      Jim Higgins 4 years ago from Eugene, Oregon

      So glad you are back and that is was nothing as serious, "ya know, the big C." You were so lucky to find such a good ER Doc, one who cared enough to search out the cause for you. Maybe he can give a good referral for a specialist as smart as he is.

      We look forward to your next hub and the one following as well!

    • 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.

    • 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!

    • 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 ?

    • ImKarn23 profile image
      Author

      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

    • 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

      @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

      @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

      @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

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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

      @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!

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      Karen Silverman 4 years ago

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

    • 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:-) :-) :-)

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      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.

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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!

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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...

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      Karen Silverman 4 years ago

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

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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!

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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!

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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

      @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

      @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

      @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!

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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!

    • 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.

    • 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.

    • 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 .

    • ImKarn23 profile image
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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..

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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

      @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

      @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

      @Girishpuri: Thank you my friend! You too!

    • ImKarn23 profile image
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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..)

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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

    • 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.

    • bravewarrior profile image

      Shauna L Bowling 4 years ago from Central Florida

      Please do, Leslie!

    • ImKarn23 profile image
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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!

    • 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!

    • ImKarn23 profile image
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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

      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!

    • 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

    • 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

    • 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

    • 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.

    • ImKarn23 profile image
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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

    • ImKarn23 profile image
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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!

    • ImKarn23 profile image
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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!

    • 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

    • 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!

    • 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

    • 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.

    • ImKarn23 profile image
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      Karen Silverman 4 years ago

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

    • ImKarn23 profile image
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      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
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      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

    • 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

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      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

    • 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
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      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!

      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

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      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

    • 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
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      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

      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....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...)

    • 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
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      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!

    • 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
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      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

    • 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
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      Karen Silverman 4 years ago

      @Rolly: Right back atcha, my dear friend!

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      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

      @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!

    • 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

      @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..

    • 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
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      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!

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      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 ....

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      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!

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      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

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      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..

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      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

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      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

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      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)

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      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..

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      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?

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      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

      Wow! That is one busy doctor.

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      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.

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      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.

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      Karen Silverman 4 years ago

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

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      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.

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      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!!

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      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

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      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!

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      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

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      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 .

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      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

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      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

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      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

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      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

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      Canucklehead 17 months ago

      Just diagnosed with this condition weeks ago

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