Health knowledge made personal
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My new pain doctor has me absolutely furious. I haven't really liked the man since he told me I was "doctor shopping" (in my case I like to call that looking for someone that can help) but I guess I got what I wanted -- someone to help diagnose. The first pain doctor categorically refused to assist in diagnosing me and would only ramp me up on drugs so I eventually found someone who would assist in a diagnosis. But, at that same time I finally got in to Hopkins where I now feel I can be better diagnosed and hopefully treated. But new Pain Doctor still wants to stay in the game. I was just there last week to discuss tapering off the drugs (against his advice) and now he wants to send me for MRI's of my hips. WHAT?! Totally out of left field. He himself thinks this is a pudendal or genitofemoral nerve problem (neither of which will show up on an MRI). I'm trying to avoid any more unnecessary expensive testing that involves radiation. I've had enough. Enough, enough, enough. 9 months of useless testing. I've had enough radiation to last a lifetime. Now I just want everyone to leave me alone except for Hopkins and my physical therapist (on the off chance she's doing some good).
Sometimes when you get what you're asking for it's just not what you want anymore. My internist keeps calling for me to reschedule. He adds no value to this situation. I essentially pay him $350 in cash and then proceed to update him on what I've been doing with all my other doctors (whose records he has). It's comical and a complete waste of my time and money. I'd get more use out of telling my story to a shrink for that price. But, hopefully he will assist with a disability claim if this is not diagnosed and resolved by September. So, we gotta keep him in the game. And, since there was lots of recent heated discussion among the commenters regarding my Houston PNE trip report, I thought I'd add that I got the insurance company's bill from Dr. Popeney who performed the electrodiagnostic testing (PNMLT, etc) in Houston. He billed the insurance company $1900 for his time with me. I must say, I cried when I saw that bill. Not because I'm paying it - my insurance company foolishly is. But because I thought $1900 for THAT barbaric little session. Amazing. Let's put it this way - they had to stamp in large letters on the invoice they submitted - THIS TEST IS A MEDICAL NECESSITY. Yeah right. It's called guinea pig testing. As a commenter on the previous posting seemed to suggest, this may be the best that they have to offer PNE sufferers at this time, but my response is that's not what all PNE doctors do. The PNMLT is a tolerable test and is what many doctors do (though NOT all because about half the time according to Dr. Popeney the results are normal in someone with PNE). Doesn't sound like such a helpful test afterall. A quantitative sensory test - also a perfectly tolerable test. Once you get into the realm of other electro testing - find out what they're doing. There are a number of PNE doctors out there - use the links provided at the side of my page to find them. They will all return your calls and you can ask them specifically how they come to a diagnosis. What testing they use. To get a diagnosis, you don't have to undergo painful, unnecessary testing for a Doctor's academic purposes. That's not YOUR purpose. The other PNE doctors are not doing all of the Houston testing repertoire.  |
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