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Medulary Sponge Kidney
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An_255092 posted:
After being diagnosed with Medulary Sponge Kidney for 10 years, a black spot was found on my left kidney when I went to the ER to get a shot for what I though was a kidney stone.

The cancer was removed within 2 months of finding it and no further cancer treatment was needed.

I have kept up with my follow ups for Nephrology and Urology.


Yesterday my Urologist tried to tell me that he saw no reason for the Medulary Sponge Diagnosis and suggested a neurological consult.

After comming home upset I found on my Geisinger.com all the test results, Dr visits for MSD, and the fact that I have been having re-occuring pain in my left kidney area since 2002.

I feel the Urologist did not look into my records of my past tests and diagnosis. He pretty much said the pain in my left kidney for the last 12 years couldn't be happening.

My Nephrologist diagnosed me with it 12 years ago. I have a re occuring pain each month in the same left kidney that lasts 2-3 days and then passes. It dibilitates me, I take tylenol3 and put heat on it and go to bed.

How do I know my health plan even converses with each other?

My Urologist made me feel like a drug seeker yesterday, if he had these spells for the last 12 years maybe he would believe me.

Please tell me what medulary spong kidney is and is it possible to keep having these terrible pain spells from it?

I am ready to check into the psyc ward just to have someone really listen to me and be there when one of these spells occur so they know they are real.

I am so depressed from this I take buspar 2 times a day and Lorazapan 3 times just to settle my nerves.

My friends and family all are fed up with me saying my left kidney is bothering me again and so am I.

Is there something I can do to stop this?? I can't take it any more.
Reply
 
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john-skpt responded:
I posted a brief description of medullary sponge kidney a couple of days ago, it's still visible a few posts down the list here.

It DOES vary for every patient, and the number and frequency of stones varies for everybody.

If anyone has done a CT or even an X-ray in the past, I'd ask to see it. There really is no "cure" if it is medullary sponge kidney and not a confused diagnosis. The goal, then, is to control and to minimize the symptoms.

[here comes my rant> I've never really liked most urologists; I had to 'fire' one when I was in the hospital and ask that he not be allowed in my room any more. After trying several others, I finally found one that I felt I could trust. The unfortunate thing is that these days practices have merged and merged again to make more money, so while you can probably get a different doctor, he's probably in the same practice as the other one. And it's bad internal politics to have one member of a practice criticize or disagree with another member of the same practice.
 
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mishkamouse responded:
Dr John,

Thank you for discussing this with me. I guess it is up to me to find another Urologist to deal with. Our health plan has so many, mine is considered one of the best in PA. I have logged into a few other sites and found a story printed in the American Journal of Medicine by a 37 year old woman who has been suffering this disease stating much of what I've gone through. The next apt. I have I will print out that and any other articles stating our pain is real, not imaginary. We suffer chronic pain. I have been referred to Pain Management clinic in February, they will do an MRI of the exact location where the pain exists.

Thank you for supporting this site. This may be the only sounding board to many others.

Obama wants healthcare for all, he neglects to see even those of us with excellent health plans still are responsible to pay a copay of $30.00 Mine) for each specialist visit, $20.00 PC copay and all coinsurance fees for MRI's, Ultrasounds etc even when your yearly deductible has been met. In the month of October I saw my Urologist, Nepherologist and PC twice ending up paying $100.00 in one month not including any coinsurances I will be billed for or filled RX. No wonder people like me are so stressed and just want help to deal with their MSK.

At least knowing someone like you cares to help our suffering is listening to us, it gives me more relief than you can imagin.

God bless you and any others who share this site.

You can be our lifeline.

With out communication from our health systems we beg for,
depression can very easily take away our hope and end up taking our lives for lack of a feeling of care. I'm sure you have stopped a few of us from just ending our unbearable pain by taking our own lives. You are our guardian angels where it is hard to believe we have any.

Sincerely,

Marysia
 
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john-skpt replied to mishkamouse's response:
Have you perhaps tried to find a female urologist? I know that this sounds ridiculously sexist for the 21st century, but from all the stories that I've read on WebMD, there seems to be a real bias with some--not all, but some--urologists and women patients. The docs seem more apt to be dismissive of female patients, saying "oh get over it. it's all in your mind. tough it out".

Obviously no doc male or female has the right to treat patients that way, but I've read about an unusually large proportion of male urologists who don't behave with gender equanimity.
 
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ccrosthwaite54 replied to john-skpt's response:
I just posted about my kidney issues and I agree with your statement about some male urologists being sexist. When I tried to tell the first urologist about the problems of vomiting that I have when taking percocet, he told me tha the kidney stones were causing the vomiting, not the percocet. Percocet makes me extemely sick (without kidney stones). Then after performing the first lithotripsy and scheduling a second, he cancelled the second one and I thought the stones were completely gone only to find out there were several still sitting in the center of the kidney that were 8-11 millimeters in size. He was going to pull the stent out and told me that he felt I had wanted some kind of assurance that it (a blockage) wouldn't happen again. He also made a remark that most of their patients don't end up being ambulance transferred to another hospital (there was no urologist coverage at the hospital I went to). He also said the chances of a blockage was very slight and the event must have happened on a Sunday and that the stent was inserted because of how I handled pain. That if a stent had to be put in for every stone in a ureter that is all they would ever be doing. I was shocked at how he spoke to me. At that point I told him I wanted the stones GONE! He left the stent in and told me that he would schedule another blasting with his partner. That was fine with me! What a difference! For the first procedure I never even saw the doctor...not before, during or after the procedure. I felt that was wrong! With his partner, the experience was totally different. Imagine my surprise when a KUB x-ray showed a 10 millimeter stone again stuck in the ureter along with large fragments in October. My urologist told my another blasting needed to be done so a complete blockage didn't occur. He said either him or his partner would do the procedure...NO...I want you to do it. He did make the arrangements after I explained why I didn't want his partner doing it. He didn't say anything of course when I told him the reason. This urologist is easy to talk to and actually listens. Not sure what his partner's problem is or was and at this point I really don't care to know!
 
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mishkamouse replied to john-skpt's response:
Thank you for responding to my neverending problem. Our health plan and health system are joined together at the hip. Our President used them as a perfect model for our country's healthcare. Fortunately, our plan has picked up another in the Susquehanna Valley. My family has a history or urology issues and have used the other health system for their issues. This week I will be seeking a female urologist with that system, hopefully they have one. As a person with MSK I have no choice but to continue my search for a more compassionate urologist. I have tried to do the things my doctors have instructed me to do: drink twice my normal intake of fluids, avoid iced tea, that believe it or not I can feel the aching pain in my kidneys as it passes through. That was the only substance I was told to avoid. If there are any other I would love to know what they are.

If by chance I find a female urologist in this area I will let you know. No other person I have met has MSD but I'm sure there are a few more around me than I know.

I am curious, my nephrologist stated this is not hereditary. My father, my sister and my brother all have had odd urinary track issues. That means 3 out of 5 siblings were born with bladder/kidney problems.
I have 4 children and only my one daughter so far had an issue, she had no flaps at the openings of her ureters to prevent urine from going back up into her kidneys. Once the child urologist found out the issue it was very quickly fixed by little silicon injections that created artificial flaps. So far at 21, 13 years later she is ok.

Once again, thank you so much for helping me, it means more to me than you will ever know.

Marysia
 
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john-skpt replied to mishkamouse's response:
Almost all cases of MSK are caused by genetics, but without knowing exactly what the conditions were with your relatives, we can't be sure. They might have had stones from a different cause than your MSK. And a few cases of MSK appear to be 'idiopathic' with no genetic component.

About foods/beverages to avoid: tea is a good guess but it is only a guess (unless the doc captured stones or fragments after the lithotripsy and had them chemically analyzed. The chemical makeup of stones can vary: calcium oxalate is common, but it could also be calcium urate, calcium carbonate, or rarely struvite. Different chemicals in the urine require different changes to the diet, so I just can't be sure whether the tea idea is totally valid or not. If we assume that calcium oxalte is the culprit, there is a fairly large list of things to avoid or at least minimize in the diet. A basic list is here:

http://www.upmc.com/patients-visitors/education/nutrition/pages/low-oxalate-diet.aspx

If the stone structure is mostly urate or carbonate then the list changes to another subset of foods.
 
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msklady replied to mishkamouse's response:
Hi, I'm new to the forum but I too have MSK.
Two years now it's been rough. Flank pain is common, nausea and a all over unwell feeling is also common. Took me five doctors to find one that truly believe me when it comes to pain. He prescribed me talwin nx. Great pain reliever. I can't take most pain relievers due to rebound migraines. Now I have several stones in each kidney with cortical thinning on the left side. Just this past week I had a scope done in the bladder now I'm told I have IC.
you know even though I deal with all this I never give up my faith. I know the Lord will carry me through this all.
My doctor is a urologist named Dr. Peaster.
Keep looking you will find a Doctor that csres. I still haven't found a kidney doctor.
Don't lose faith:)
 
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24bella replied to john-skpt's response:
One thing I have learned while having MSK is to be an advocate for myself. I will not allow any doctor to tell me what I am, or am not feeling. I have had to file complaints on urologists, hospitals, and have had heated discussions with doctor's who didn't believe in my pain. Today there is so much more information on the internet that explains, "what MSK is," and "the complications," for those who suffer with MSK. In the past I printed information and highlighted the information that pertained to my symptoms, and handed it to the doctor's who doubted me. It wasn't until years of suffering with MSK that I went to a Nephrologist. Although there is no cure, my Nephrologist understood my condition and pain. I am now working with a pain specialist, because I have MSK in both kidney's and I live with chronic pain. With each doctor who does understand my condition, and pain, I learn a little more about how I can cope with the pain, and get the pain under control. For all of the doctor's who doubt our pain, and other symptoms, I encourage you to keep going and find the great doctor's who understand. They really are out there...it just takes time to find them!!!
 
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konni1 responded:
I also have MSK. Lot's of pain. I have been aware of the kidney problem for about 2 years. I am in a lot of pain most of the time. I would suggest a new doctor. I currently take 30 mg of morphine 3 times a day. I hate it. I have lost my job and have filed for social security disability. I have been denied once. Go to a pain management doc.
Good Luck,
Konni
 
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konni1 responded:
I just found this site and am so thankful. I have been dealing with MSK for about 2 years now. In the last 6 months I have been in the hospital at least 20 times. I have found out in the last month that a low oxalate diet is good. I haven't been to the hospital in almost a month now and I think the diet has a lot to do with it. Black tea is very bad but green tea is fine.
Good luck,
Konni
 
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konni1 replied to 24bella's response:
I agree. I have also filed complaints and have thrown fits to be heard. I usually ask the doctor to just listen to me for 2 minutes and not say anything, just listen. It seems to get their attention. Good luck to you. Hopefully with more of us telling them it does hurt and can be in pain for days.
Take care,
Konni


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