I have MSK, I just had surgery in February to remove stones. Of course I still have pain, my most recent CT was done in April, as I still have pain on a daily basis. The CT indicated at least 3 stones in lower pole calyx of left kidney and 4 small stones in lower pole calyx of right kidney. No obstruction in Kidneys or ureters. My urologist said we can't get those, pain meds are your only option. Does anyone out there know of other treatments?
first of all if you have a doctor that admits you should have pain with MSK, KEEP HIM/HER!! Few doctors acknowledge this and many MSKers struggle to get treatment for pain. The reason is supposedly the kidney does not have nerve ending however when you have a UTI, /kidney infection your kidneys still hurt??? Some doctors know this it is the nerve endings that are attached to the kidney and to the incoming collecting ducts etc. I am not totally studied up on this specific area so excuse my novas explanation. There is an article I posted here in the health pages also:
If you go to the healthpages, look for an article on MSK and pain,
treatment options. There is an article that lists the treatment protocols
that we have found helpeful and the safest steps for the doctors as well.
That said, though many docs are listening, willing to read the many
articles etc. and at least willing to do whatever they can to help their
patietns, unfortunately there still quite a few that refuse. So If doctor
is not one that willing to try to help you, keep lookng! Hang in there and
keep me posted. Please feel free to contact me if you have any questions!
I will aslo
try to -mail you these articles as well.
We are all born with MSK, it is a birth defect in the kidneys that causes little cysts in the collecting ducts. This changed the draining of the kidneys making us more susceptible to stones and infection.
What ever the nerve ending issue we do know that their are several causes for the chronic pain many MSKer's get. 1. Is pressure in the collecting ducts themselves as the calcifications build up.
2, The second is that bacteria actually will attach to any foreign object in the body and form biofilm infections. A biofilm infection is a low level bacterial colony that is pretty self contained. So only a few bacteria slough off etc. and it does not always show on standard cultures and test. This is because our current culture system is set up to based on colony count or number of bacteria, to find acute infections. Acute infections are life threatening... a chronic infection just makes you miserable!
So bottom if your not having pain feel blessed. I would say that you are most likely younger?? Many don't have pain till 30+. You also may not have the metabolic issues many of us that put more calcium etc. in the urine instead of the blood increasing our stones and risk of infection.
If I were you, i would work to prevent infection and stones, thereby avoiding the problems. Drink lots of water and lemonade. Don't ever let your kidneys get empty...,Vit B6 competes for the oxalates and magnesium helps your body absorb calcium so it is not in your urine.
YOu should also have your Vit D levels checked. Too high you make more stones, too low, your tired, you body can not process calcium right and you can lose bone density. If you get an infection makes sure you hit hard and till it is gone. Don't just self treat infections! I used too... take the full course of antibiotics and if you still have symptoms ask to take them longer. The FDA paper even recommends low level long term antibiotics for those with MSK that get a lot of infections etc.
There are things that can also help prevent infection, garlic, cranberry or D-Mannnose (the sugars in cranberry that keeps the bacteria from attaching), oregano and Silverbiotics. There are others too, but I think you get the idea. I hope this helps you! My deepest desire is that we get the word our and information into the hands of those young and newly diagnosed so we can avoid the problems which is much easier then correcting them!
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