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(Date Posted:18/06/2007 00:37:18)
I have sent in a message before and it has been great to hear the responces I have gotten from other people. When you have this disease you feel all alone and even the medical community looks at you like you are crazy.(most of the time)-- As I stated before I have been dealing with excrutiating pain in my right kidney for 5 years-- I have been to it seems like 100 doctors and they all kept saying that unless I am paiing a kidney stone I should not be in pain. I produce stones all the time which I think aggravates the problem but I kew something was wrong with me. Finally my nephrologist started wondering why I always had blood in my urine-- After seeing her for over a year- I started doing research on line- We decided to do a biopsy of the kidney and I begged her to send me to see Dr Hebert in Ohio-- He is the best and understood what was going on immmediately- I am now diagnosed as a LPHS patient but it seems that it is still a very unrecognized disease. They placed me on methadone for the pain. This was the worst 6 months of my life- I slept through it and the medication did not control the pain-- I am seeing a doctor now that is trying to manage my pain-- We switched to oxycontin 3 times a day and percocet for breakthrough-- I feel like fionally I am achieving some adequate pain control- I still have some bad days but they are fewer and far between- Sometimes I get really aggravated at this problem because I feel like I have been sentenced to a lifetime of pain but then I look at others and their is always someone worse off than yourself. I guess my reason for the post was to let everyone know that if your doctor is going to try you on methadone, in my experience it will not help-- I have had much better sucess with the oxycontin. If anyone knows of other things that can help-- ex foods or anything-- please let me know- my prayers are with all of you- Thanks for making me part of your community.
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