Hey dude... I'M the member of which Tuck speaks (the one with all the renal disorder personal experience & knowledge).
Sounds like your urologist is doing what 95% - 99% of urologists are doing these days... telling you that there's no way MSK and stones, etc, WITHIN the renal cortex won't cause pain, and then cutting you off from narcotic pain-meds.
Don't worry about him. It's fairly common practice for urologists & nephrologists to just STOP prescribing narcotics, and between you & I (and the rest of the PM-Forum), I really don't blame them (I'll tell you why when we talk off-line).
After all, they are KIDNEY guys, not PAIN guys (as my urologist tells me all the time). As they really don't understand pain and the subsequent opiate treatment that is most definitely required, they find themselves off-balance and on unfamiliar ground, so they'd rather just NOT prescribe historically addictive substances, and simply say, "MSK (etc) shouldn't be causing you pain. Let me refer you to another specialist blah, blah, blah...". We'll chat about having your urologist referring you to a PM-doc. THAT'S your best option for pain-relief, as your PCP (nor your urologist/nephrologist) are going to give you nearly as strong as what you probably need, nor as much as what you probably need.
I started having my renal issues at the age of 18, and I'm 39 now, so it's been a full 21 years that I've been doing this. I've gleaned MUCH information over the years, and fancy myself as quite the expert (my urologist actually calls ME and asks questions sometimes. Not medical/surgical ADVICE, mind you, but my opinion(s) on stones and pain, and what pain-level certain things have historically caused me).
I feel your pain Brother, truly I do. Private-message me and feel free to pick my brain clean. Should only take you a minute or 3, as I don't have a very big brain!!!
Later Brother.
LMNO (aka: Carl)
*Please bear in mind that I'm not a doctor... just a guy with LOTS, and LOTS of stones, surgeries, mini-procedures & multiple renal defects! Carl
Hi Dylan,
Welcome to the Pain Management Forum. I am so sorry to hear about the frustrations you have encountered finding a diagnosis .... and now a physician that is knowledgeable about MSK.
Have you done a Goggle search to locate a physician that specializes in MSK in your geographical area? If not I suggest that you do. I have found great information, including physicians in this manner.
We know about chronic pain and can relate... and we know how difficult it can be to find a physician that believes you have pain and will find an appropriate treatment. You are always welcome here for support and suggestions regarding pain management. However we don't have the knowledge, support and experience regarding MSK that you will find on MedHelp's Medullary Sponge Kidney Disease (MSK) Forum. I'm going to provide you with that link and ask you to copy and paste your post to this forum. Here it is:
http://www.medhelp.org/forums/Medullary-Sponge-Kidney-Disease-MSK-/show/256
This is a life-long disease and you will need an experienced speciality physician to follow and treat you. I don't have a lot of information about MSK but we have had members with it that do report pain.... for various MSK related reasons.
I will contact one of our members that I believe has this condition.... or one very similar to yours. He has great information and personal experience and I will suggest he contact you. But again I urge you to post in MedHelp's MSK Forum.
I'll do a bit of research and try to get back to you but if my memory serves me MSK can be very painful. Please let us know how you are doing. We're here to support you.
My Best,
~Tuck