Medullary Sponge Kidney Disease (MSK) Community
MSK and kidney transplant
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MSK and kidney transplant

Hello everyone,

I recently found out I have MSK and was told I would definately need a kidney transplant at some point in my life, but most likely in about twenty years.  I have tried to research MSK, and all my research seems to say that kidney failure is rare, so I don't understand why I would need a kidney transplant.  I was just wondering if anyone else has been told this as well?  
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489228_tn?1291535054
NO I was told that was not likely.  It could be the doc your going to may have a misunderstanding.  My sisters has often "joked" about taking care of my kidney etc.
because she thinks that is in the picture.  MY concern is most of us with MSK and stones, problems etc also have metabolic issues that may or may not result continue with a new kidney.  Of course the collecting duct issues would be gone.

  How bad are your calcifications?

I can post this questions to others if you need me to!

Shelly
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168348_tn?1379360675
Hi,

WELCOME to our community!

C~
MSK with Stones
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Avatar_f_tn
I have lost my right kidney to this stupid disease, I won't let it tske my life. My suesting is to go Dr shopping and find one that is wiling to lisen to you.  Good Luck

Stephanie
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489228_tn?1291535054
Stephanie,

   I am sorry to hear all you have gone through.

   I would really love to hear your story.  You can pm me if you are more comfortable or so we don't scare anyone etc.or not your choice.  Really it only together we are
learning about this disease and how ti effects us long term.  By talking to and listening to the story now of 100's of MSK patients, I hear some things over and over that I now
believe are "classic symptoms" etc.  Please share with me... none of us likes to face the
hard facts of the ugly possibilities but I want to know the truth etc. with the hope of
getting some attention on this disease as well as research dollars.!

You are not alone, we are in this thing together.  Your input, your story etc can help to change the future for MSK patients here and in the generations to come!

Hugs!
Shelly

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Avatar_f_tn
Hi All

I have just come across this post and Steffy I am so sorry to hear your news and wish you good health or as much as you can get with MSK.

I was told that I could lose my left kidney in a few years due to the function as there is not a huge ammount left after all the Litho over the years... He basically said its like mush... I am expecting this to happen but hope i can hang in there for a bit longer.

Sarah

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Avatar_m_tn
I found out that I had MSK when I lived overseas in Africa.  My biggest problem since then has been kidney infections.  I usually have a lot of pain with the infections but then it goes away when the infection goes away.  I usually have 5 or more a year.  Is this normal for someone with MSK?  They say I have no stones only calcification.  Does the calcification make the infections reaccuring  or are they separate issues and is there a way to get rid of the calcifications?  Thanks
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168348_tn?1379360675
Hi,  I am not too too familiar with the calcifications, but all too familiar with UTI's .. I have been lucky most have not been kidney infections.  But  from what I understand -- the stones are so porous that the bacteria easily is trapped in them.  I wonder if the calcification works the same way ? Anybody know?

Also I believe that we always have some type of stone activity going on but not all shows up on tests, leaving us wide open for infection.

Just my two cents.

C~
MSK w/stones
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1269456_tn?1318389501
Yes, I totally agree with you. I just saw my urologist yesterday and he explained a few thing. I had an unsuccessful surgery in July and I learned that I'm still sick with infections and hurting because he didn't do a papilotomy where my stones are stuck. He only removed the free stones. The stone surface is very porous and ridged so bacteria hides in them and cause infection. I don't have calcifications so I don't know anything about that.
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934794_tn?1304974871
I too have MSK and I feel like I cannot get any doctors to take me seriously. I have had stones for about the past 5 or 6 years and everytime I see a doctor or go to the ER they treat me like crap. I just don't understand it. I actually found out that I had MSK from a report the doctor printed out for me after stent surgery. They did not even mention it to me!! I hardly know anything about the disease so I have been doing research of my own because when it comes down to it the only person I can count on is me!
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Avatar_m_tn
i am 27, i had high protein levels when i was a child and then nothing was wrong with my kidneys until i was pregnant with my daughter and started having kidney stones.  From the time i had my first stone in may 2003 i had them every May, no joke.  I seriously dreaded May's.  Now, i have had 27 stones that i have passed, had to have removed, or have been hospitalized for, ive had 25 catscans since 2005 and now am no longer allowed near a ct machine.  I have a uti atleast once a month and probably 6 of em sometimes more a year are complete kidney infections.  kidneys are supposed to be 10 cm in size mine are 16.0 cm on left and 17.8 on right.  I am in constant back pain in the kidney area that radiates around into my mid abdominal area.  I have been red flagged at the hospital for just being a drug seeker, been discharged from hospital while still having bilateral infections and bilateral stones, and could barely move, and they walked in said heres a script for oxycontin, im sure this is all you are wanting, now get out.  Because i am young, because i am in constant pain, and because my tolerance to pain meds has drastically increased of course it looks bad, and i wish i was just lying or seeking drugs.  I'd rather have that then seriously be in pain with nobody that believes me or understands.  The pictures of my kidneys look disgusting, they look like sponges holes everywhere.  I have stones that have been stuck in the same place for 3 years.  I owe hundreds of thousands of dollars to hospitals and drs and as i get older this problem has done nothing but get worse.  And, the worse it gets the worse i get treated.  And, taking anti-inflammatorys just makes it worse.  Sadly, narcotics are better for you in this situation than otc medications.  I have run out with options for myself, and am still so young.  I am in constant pain, and constantly sick.  And, noone who really wants to help me.  my first urologist said you are fine there is nothing wrong with you, i asked him well then how come my kidneys are twice the size and i am always sick and always in pain, he just looked at me and said well, ill send you to someone else, luckily that next dr was great, and waisted no time finding out what is going on with me.  i am sorry to all of you who have this problem and hope you all have better luck than i.  Just to let you know incase you have no insurance or not so great of insurance, i know cts are more expensive, but waisting your time with an ultrasound is honestly a waist of money, and it rarely tells a dr anything or shows anything.  IVP's do work but are kind of a pain in the *** exam, cts show the best for stones, and pictures of your kidneys. Always make sure you tell hospitals, drs, etc that you have msk because the more of anti inflammatorys ( aleve, ibuprofen, advil, naproxen, etc, pretty much anything besides tylenol) you take the worse off for your kidneys.  A lot of drs try a lot of antibiotics, the best are cipro.  (and probably in a higher dosage) good luck to all
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Avatar_m_tn
I was diagnosed with MSK 10 years ago and after numerous procedures and ops have just had my left kidney removed due to infection. I Went for a check up today and have just found out my creatine levels are high and they are worried I may have an infection in my remaining kidney. I am at my wits end! ! am 37 yrs old and feel useless. I sick and tired of feeling sick and tired!! My doctor is less than supportive and my consultant is not much better.I can't work any more and can't get benefits as after all it is just "kidney stones" I suffer with, nobody seems to understand! Especially where I live in the UK there is very little known about MSK and it is just passed off as minor condition with few complications ...... not in my case!!
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Avatar_m_tn
I'm so sorry to hear of the trouble everyone seems to be having with their doctors.  My husband has had MSK all of his life but he has been fine until recently.  He is 37 years old and has just been diagnosed with stage 3 kidney disease.  When his MSK was first diagnosed in his early twenties the doctors put him on a special diet and was absolutely not allowed any anti-inflammatory medication.  That just about killed him.  He passes most of the protein in his urine along with other nutrients I'm sure. He can't go on a special diet.  I'm not finding any information on how to treat this condition so I'm cooking all the time making sure he does not eat as much processed food.  He has gained 6 pounds.  I hope that's a good thing and not a bad thing.  Good luck to all of you going through this and if anyone knows of any information to help I would sure appreciate it.
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