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Medullary Sponge Kidney Disease (MSK) Community
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MSK, SSDI approved

Hoping to have MSKKELLY contact me for some information but I also thought I would introduce myself especially as I'm sure many of you would like to know that I was actually approved for SSDI on 9/17 (but back to official date in 4/14).
I dont know if anyone has ever been approved for SSD for MSK alone though as I do have other issues.  Those other things would not warrant SSD however and honestly seem like nothing compared to my chronic pain from the MSK.
I am 53 and male.   Kidney stone issues started back in 89 while serving in the USN and slowly progressed to medical retirement after 10 years of service in 1/96.
I was diagnosed with MSK I believe around 98 and of course at that time Doctors hadn't a clue at all (just as most still today) that you could have kidney pain without a blocked ureter or moving stone.
I continued to work up through 4/14 when I had a bad shoulder injury ending up with 80% loss of use right arm.  Through the years efore that point I had continued to work but my pain issues just got worse and worse and I was missing a lot of work.  Was able to work way longer than i should have been with this problem mainly because of my sheer willpower and a GP that actually tried to help me (pain meds) regardless of the different urologists and neurologists that were either clueless (most wanting to remain that way regardless of information you try and present them with) or false ideas on what would help reduce the occurrence of stone formation.  
I have been on fentanyl patches for at least 7 years through my GP.  So I have 24/7 help to bring my baseline pain level down to help function with some kind of quality of life.   If it wasn't for some form of serious pain management I would have not been able to work a few years earlier than 2014.
I dont know what is going to happen with my care soon.  My GP just retired and I see his young replacement in September.  My next pain med refill is coming up at the end of next week so we shall see.
I'm also going to be seeing a different nephrologist in a month (before seeing my new GP) which should be interesting.
The main head of all nephrology in my area (Rochester, N.Y.) received $ approval for some kind of study so he isnt available anymore.  Doesnt matter anyway since he was one of the "know it all" types that didnt care about any studies on MSK I tried to give him.  When I first met him he claimed to have had other people with the issue and his idea was to make sure that all your bloodwork and urine was all in the normal range.  What it boiled down to was if you are eating healthy so all the tests came back normal for all your vitamins minerals plus things like salt intake then you wouldn't have the problem.  
Bottom line is none of it did a thing to lessen my pain and I remember that one of the very first things he said to me upon meeting him was that he doesnt prescribe pain meds (which I hadn't even brought up).
Anyways that's my basic story leaving out years of my journey dealing with it:)
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