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Originally Posted by catra121
Well...the GOOD news is that all your treating doctors are on board with the diagnosis and since the only way to diagnose RSD is through a clinical diagnosis...that's in your favor. Work comp will probably try to use it against you...probably prolong things and set some approvals back and so forth...but honestly they have no chance of getting a judge to agree with them on the basis of one test that cannot prove RSD one way or the other. I literally went to court for my appeal and the work comp attorney said all I had was a sprained ankle (2 years earlier at the time of the accident). Ummm...yeah...I was in a wheelchair at the time, had a bunch of lumbar sympathetic blocks, months and months of physical therapy, on lots of meds, etc...yeah...that's standard treatment for an ankle that was only sprained 2 years earlier. Sure. Makes you want to vomit how disgusting the system can be sometimes. This was all based on an MRI that showed nothing except evidence of an old ankle sprain (taken several months after the accident). Ugh...still makes me mad.
But it sounds like you are in pretty good hands overall with all your doctors agreeing on the RSD diagnosis. It's great that your doctor is willing to learn about RSD and hopefully is willing to keep an open mind and help you continue to seek out new treatment possibilities. I had/have the same even though I have sort of settled into what is working for me at the moment with regards to treatment. The biggest difference for me in seeing my doctor who was still learning and willing to learn was that I always left her office with OPTIONS and feeling like there was still another thing to try. She never gave up on me and that was huge in helping me get to the point that I am now.
Not that I'm saying you shouldn't see an expert on RSD...just that the number of RSD patients a doctor has treated doesn't always correlate with their success in treating it. I am a firm believer that the "right" doctor for one person may not be the "right" doctor for the next one. We're all different, have different needs, and experience is only one component of what make up whether a doctor is the right one to treat you or not. If you are happy with the care you are receiving then that's what matters.
Take care and good luck!
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Hey guys.. I wanted o thank you all very much for your kind words, and advice. My trip to Johns Hopkins is next week, Im stressing a lot about the travel , I hate public transportation, and was never big on traveling. That said, I will be alone and latley with my pain levels sky high I have been passing out a lot, so im affraid of missing train switches, and sleeping in the day of my appointment.
I have seen the reports from my doctors because of the JH consult and I'm appalled by what I am seeing. its like the dr,s were writing down notes from another patient. Orthopedic said he compared legs on every visit, he never even asked to see the other leg, he also said no discoloration.swelling or color change. yet those are why he sent me to a vascular surgeon. he never commented on loss of hair, and crumbling nails, or any of the sores that were present during exams. then I find my neurologist did the same thing. ?? now my pain management dr and My vascular surgeon have noted my chart correctly, then my spine specialist has mixed notes.. what are they doing??? do they even know. the only thing they all share is my diagnosis? which you have to wonder how they came up with it..well wish me luck