I was just diagnosed with TBMD and have flank pain. I've had pain for a little over a year and have had numerous tests which showed no explanation for the microscopic hematuria and flank pain I was experiencing. Finally a nephrologist ordered a renal biopsy and found this diagnosis for me. He seems to think the pain isn't that bad and after some research on line, I wonder if there is a debate in the medical community about this and loin pain hematuria syndrome. My nephrologist didn't diagnose me with LPHS, I think he doesn't believe it exists. I know I have pain every day. Some days I can deal with it, other days it's so bad I would rate it 8 or 9 on a 10 point scale. I'm a 45 yr old woman who has never had any major medical issues. Nobody in my family has kidney issues. Needless to say this has been a scary year for me and I'm frustrated with doctors who don't know about this or don't believe in it. What can I do?
i dont think your doctos is very compassionate. i have lphs and i have had doctors treat me very badly. some dont think it exists. it seems that they dont live with it so they cant relate. i have fairly good docs now and i just kept going to er and told them i could not take it. some visists were good and some were very bad, especially in my hnome town. small hospital, with doctors who are idiots. they refuse to treat me because of depression and anxiety problems. its ricidulous how they just assume you are drug seeking. just keep pounding the pavement . hopefully you can find a doc who will listen and care for you. i wish you luck, and hopefully some peace in knowing you are not alone.
I just got diagnosed with TBMD today, had a kidney biopsy.. I have pain in left kidney morning, noon and night? I told the dr and he didn't say anything?This is why Iam looking online to figure why I have this pain? also I get dizzy a lot too? Iam calling the nephneurologist and my pcp tomarrow! will let you know what I find out. It is very frustrating and you are not alone. God Bless!