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Originally Posted by painman2009
Im getting very nervous now.. I have no choice but to keep appointment. COMP>>> and all. plus I would be remiss I think to throw away all the work My neurologist put in to get me there, he believes in me and truly wants to help; of course im also scared because he admittedly is a novice still regarding RSD. but he was the one whp dx,d it and he is learning with me..the first dr I ever met still willing to learn.. but of course his mistakes can cost me as well..
any way the DR I have an appointment with is Dr Ronan SHecter. and I am going mainly for an evaluation and consultation. not for treatment.. so ?? I dont know maybe that will be a difference for me. I dont really know.
Its funny how one 3 phase bone scan can give you the diagnosis but another can say you are fine... To be certain, after four years of this, I am positive of RSD as is My neurologists, and my pain management dr has no doubt. in fact he was trying to stop the second test as he said it is no longer a valid test for RSD... I do want another radiologist to read the scan because what the lady at my ortho,s said to me is all that was written on the results of the bone scan. no evidence of RSD diagnosis invalid,, but he didnt mention anything els about the scan ..oye the fight just got harder. thankfully I just got a new primary DR for my general health and she is learned in RSD in fact she see 5 other people with it, and she agrees it is RSD(hello!!! color change, sweat, frail and rigid nail growth, lack of hair growth ,soars, swelling, I mean come one people how many of the symptoms (visually ) do you need before RSD is the only answer for them. do they think I like these test.. yes Irradiate me for no reason, or.. shove those needles in my spine legs arms bones and then electrocute me,, or sure shove those injections into my spine though each time I risk paralysis.
ohh yes give me those pills.. kill my kidney / liver etc I want to die young.
((ALL sarcasm by the way)) all I want is to get through my day with low pain levels. right now I have a tooth in need of root canal, ..hello tooth pain the worst right.. well its preferralble to what I feel in my feet legs neck back and arms,......ok I bubbled over again.. sorry.. thank you all for posting your experiences ,, please keep them coming, so others can learn as well.(your not alone,).. I wish you all better days, and I keep you all inm y thoughts and prayers every day.
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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!