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I have multiple masses on both my kidneys, non-cancer: Why?
Hello , I'm trying to find someone like me in the world. I have multiple masses on both my kidneys. My biopsy came back as non cancerous but they are rapidly growing. My Dr has no clue as to why this is happening. He started he couldn't find a dr that had seen a case like mine. Has anyone else had this experience?
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The idea behind the mass, as I said, is to freeze it and it is consequently destroyed through the freezing procedure as I understand. My treatment was an outpatient and I read that this procedure is 90-95% effective. Whether yours is cancerous or not, it can be destroyed by this specialist radiologist. Because you have both kidneys infected multiple times, I am pretty sure you can get an answer by being treated by the interventional radiologist.
With regards to my CKD, I am working with a renal dietitian at Mayo and a well educated Chinese medical doc acupunturist who is also a Ph.D. immunology graduate from Vanderbilt. My last GFR went up in 2 & 1/2 weeks from her initial treatment. The true test will be next week when I see my Mayo nephrologist with my new lab tests.
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2 ReactionsWow, that's excellent @collegeprof that you are already seeing improvement after your diet change. (With the kidneys, so much is about the diet!) Please keep us posted after your new labs and Mayo nephrologist appointment. It sounds like a are on a good track! Thanks again for the discussion. 😊
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2 ReactionsHave CKD, stage 3a to b. Goes back and forth. Have multiple cysts in both kidneys. No one has suggested interventional radiologist. Sounds like a super idea, but bet this sort of treatment is only performed at hospitals like Mayo. Seems to be fairly common problem, but as I and other patients have said before, wait and watch seems to be the most popular option. Seems like treatments should be advancing but they're not. Wish they were.
Open to all suggestions. Also have ME/CFS. This is the cyber age. Why isn't there some sort of cyber treatment? And if you've heard about it, let me
know.
I have two spots on right kidney. Had genetic testing 6 years ago and it showed i have birt hogg the spots were found on recently on mri without contrast also had cat scan with out contrast and they were not seen and aultra sound and not seen now they want to do mri with contrast . iI have had reaction to contrast in the past and am wondering if it is necessary.
@islandfantasy21 Welcome to Mayo Clinic Connect. It must be distressing to to told about these two spots on your kidney! Was the MRI specifically for a renal situation, or other abdominal issue?
Last year I was told I had a kidney tumor in my right kidney, in a CT scan [no contrast], but upon further exam with ultrasound, it was determined to be a dense cyst, as the ultrasound did not show any blood flow in the mass. If you question your doctor about any blood flow showing in the ultrasound report, you might find it is not a tumor, but a cyst. With a history of reaction to contrast, make sure your doctor is aware of that and ask their thoughts. I am sure they do not want you to have an experience like that again!
Here is a link from Raredisease.org on Birt-Hogg syndrome. Do you show any other symptoms at this time?
https://rarediseases.org/rare-diseases/birt-hogg-dube-syndrome/
Ginger
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