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.

I have seen pictures of what you are discribing. The bleeding all of it. It was with CRPS. They must pay attention to you. If not make yourself at home in the ER. I know you are suffering. Someone has to help you immediately. I will keep you in my thoughts and prayers. Ginnie

Ok.. I went to jh with a open mind and hope. I left ******, crying in pain, and ******. I saw two dr,s the first was very patient, compassionate, and thourough, she lisened to what i was saying and viewed the photos i brought. When she started to examine me she surprised me when she sqeezed my leg.. "i dont deal well as far as controlloing tears when im surprised". An i started bawling.she felt bad and decided why put me through this twice. As another dr.."dr schecter" was to examine me as well.
So she came back with this dr. And he didnt want to hear what i was saying unless i was answering his qyestions."he liked to hear himself talk" when he asked what i was looking for from the i answered " i want to know that this isnt my life.. That i have better options than what is drawn out for me so far,with out surgery ." he then started looking at my legs he did temp check on bilat legs.. They were the same temp.as the other..(not really they were .3 difference except the toes wheree the were .771 difference.from each other. That being said i had told him it was bilateral rsd. Hello!! He said he still saw hair on the leg so.. But it was so little hair compared to 4 years ago. He said no color difference. I said from what a dead man.. I than showed him my right arm. Where my color was normal for me. And said this is what my leg used to look like. He then noted some spider vein and said this could be the issue. Then i pulled out the report that said it wasnt a problem and both legs were good. He seemed so ready to discount the dx. He said alot of dr,s use the rsd dx when they dont know what they are talking about. Mean while he was going down the list of symptoms and i i didnt have one he would say.. And it would be present if it was rsd.all that time he was talking to the other dr. And ignoring me and the tears that were flowing because he was handleing me like a pice of dead meat. Then he said stand up. And when i didnt because i as bawling he said come on you need to sit up at least. The other dr finally spoke up saying give him a minute he is in pain.
When i sat up he was right in front of me and he was telling me what he was going to tell my dr,s which is.. He wants to treat it like rsd because im in pain and we cant id anything else. But he wants me to have a cardio first to eliminate any possible heart related symptoms. Then he wants me to go for pain psych. And ketamone plus he would like to see me go on methadone... Really meth?? He started to examine my hands then he noticed the callous on my right hand .. The cane wielding hand.. And he aske me about it. So i grabbed the can. And he said to the other dr. See there .. Its proof he is living in severe pain and reies on the cane . The he noted the callousin his notes. I dont know why he examined any other part of me when all he seemed to need as a callous to prove im in pain.. .. Hello the tears, screams moans, and grunts werent enough... Duh.. So


he left the room and the other dr (the nice one) she left all notes on exam table for me to review!! Im glad because he put down i had rsd/crps types 1 and 2 in left arm and hand, bilateral lower limbs and other pain related sights in back....
So i left shaking my head not really sure what the taste was in my mouth. If you know what i mean? Im dont think i would let him treat me ill tell you that.

When treated poorly, it doesn't do a person good at all. Doctors forget to be compassionate sometimes. I hope the one that was kind to you will give you the medication. Methadone and all that class of drugs is not fun, but if it in any way helps you to have a quality of life, agree to it. I took morhpine for many years. I asked to be weaned off last year, when I thought my neck pain and ankle pain was tolerable. I had been told I would be on it all my life. That being said, if you do go on this medication, it will mean living your life around the times you can take it. Weaning off is miserable. The drug should help you and your RSD. Did the docs. mention Ketamine infusions? Sometimes this form of treatment works too.
I am sorry you were crying and so distressed. I have been in that sitaution too where I could not hold back crying.. I wish both of those doctors had treated you in the better way. I wouldn't see that doctor or let him treat me either after he showed that behaviour. Hope you have some help to get you into a better place. You are in my thoughts and prayers. ginnie

Goodness...I think I would have walked out of there so messed up mentally with such mixed emotions that I would have felt insane. I think you handled it better than I could. Sounds like he was baiting you. The doctor who first diagnosed me was similar to that. I did not like him at all as a doctor...but he diagnosed my condition and for that I am forever grateful. It was only in hindsight that I realized what he was doing by acting the way he was, trying to make me mad, get me to say something that would show if I was lying, getting me angry enough to fight, etc. I don't care for that particular bedside manner...but I guess it works for some people.

Glad he at least confirmed the diagnosis despite everything else. The worst thing would have been to go through all that and for him to say it's NOT RSD...so at least you have that going for you.

Take care and hope you are resting up physically and mentally after all that.