These stories really ht me in the heart! I hope you find a good doctor soon!!

Just be careful, a doctor oops'ed and that is how I nearly lost my leg, and got the danged RSD :(

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.

Heck, life can be so rough at times....keep going and hang in there ;)

I hope everything goes well for you, just try to stay as calm as you can and you will get through it....let us know how you get on :)

Bram :grouphug:

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!

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

Painman, it is soooo frustrating to know that yur docs aren't as professional as you hope and expect them to be :rolleyes:

I always record every single appointment I have now on a recording app on my mobile phone. It helps on several levels - it allows me to concentrate on what the doc is saying rather than trying to make notes, I can check back afterwards and make sure that what I THINK he said is actually what he said :winky:, and I can reassure myself that I haven't gone mad when he contradicts something he said earlier.

I don't ask permission, I just start the recording when the nurse calls me, and put the phone in my bag. The recording is for my personal information which is fine, we all suffer from a certain amount of memory and concentration issues with CRPS, so I think it's a sensible thing to do....

Good luck! I really hope you get some better news soon and feel a little more hopeful....

Bram.

I tell you...doctors really don't seem to have a clue how important those reports they type up are for patients who are trying to deal with work comp and similar situations. The mixed messages can seriously delay treatment and cause you to suffer unnecessarily. Even reports that are too vague can hurt you. At LEAST you have the diagnosis...and since they all agree on THAT then it shouldn't be too bad.

Good luck with the Johns Hopkins thing. I'm so sorry you have to go through it alone. Let us know how it goes.

Hello Vrae
 

I liked your highlighted quote. We know our bodies better than doctors who dismiss us. I got lucky with my doctor, he actually knows what the PN or RSD is. So many just don't care I think, because they don't know how to treat it. ginnie

5 days till im off and stress is building.. my neck is causing my arm to spasm so bad my arm flies off on its own.. tad scary really. sleep is hit or miss, plus pain levels are off the charts. yesterday the pain got so bad I lost it a little almost destroying my stove vent.. the pain is nagging me like a long high pitched sound that keeps getting louder and louder, my thoughts are scattered, confusion is to such a point I am forgetting where I am sometimes, or what time of the day it is, and eating is disrupted too,
My teeth are hurting as well , I think because of grinding them, and its worse because I have been biting my tongue as well. so when I do sleep I wake with my tongue bleeding too. I cant wait for this appointment to be over with.
tuesday I saw my neurologist . and my wife has been taking picts. of my legs arms and feet. so I showed him. .. his jaw dropped, then I made him look at my legs and feet and he was at a loss for words. He said he has never seen anything like this, my leg also started to bleed out of no-where leaving no sore or mark after cleaning other than the red..(salami skin marks) and my legs burning hot. He marked the chart, and dictated notes with me in the room. said he wants to speak to the JOHNS HOPKINS DR to try to het them to keep me under emergency observation. I wish he would have taken notice of this when I first started making comments about it. I mean the last IME physician noted the marked edema, lesions, and sores. even the bruising discoloration of my toes.
since when does and IME physician help out better than your own dr,s??
I will let you all know how it goes in JH. wish me luck.

I had one IME doctor who ended up helping me out a lot...confirming the RSD diagnosis. It was so damaging to work comp that they did not submit it at my trial...but my attorney did. Every once in a great while you actually DO get an IME doc who really is "independent"...next one I had didn't have any actual evidence to say I didn't have RSD...just a lot of "patient alleges this" and "patient claims that" and "I wasn't able to see it but SOMEHOW she managed to get onto the exam table while I was out of the room" and "My view was obstructed but when she got in the car she didn't have to be lifted by her mother"...all loaded phrases meant to IMPLY that I was some how in the wrong or dishonest. No mention of the lack of hair on my RSD limb, no mention of how when he was IN the room I fell of the exam table and he had to catch me, or that I was in a wheelchair and never once stood or walked and when I tried...fell immediately. No mention of the discoloration in my RSD areas, the clawing of my hands, etc. Definitely NOT independent by any stretch. But I was incredibly lucky with the first IME and wish that guy could have been my treating doctor...but he unfortunately bases in FL and I live in Chicago...so that never would have worked out.

I hope your consult at Johns Hopkins goes well. Sounds like there really isn't any doubt about what you have and I hope they are able to offer you some better treatment. I'm sorry things are so rough right now for you. Take care and good luck.