Im to my mental limits
 

Ok so my orthopedic sent me for another 3 phase bone scan. he was looking for anything els possibly wrong and see if he can spoth the spread of RSD.
I get a call from the drs office with the results. The woman says to me"we got the results of the bone scan and it shows "NO" RSD/CRPS. " and she reacts as If this news is supposed to make me happy. Like ohhh this test says you dont have RSD so your cured. is every body in the "REAL" non RSD world this stupid ??? if so.. what chance do we have to be taken seriously. I know its RSD and we all know that a negative bone scan doesnt mean anything, just that the blood flow was working at the time. hello I burn more often now then freeze meaning the blood flow is moving... I now fear how comp will use this information. and what this means for my treatment now... I hope the johns hopkins consutation will lay all doubts to rest. sorry just venting ..any one having similar issues please tell me how it worked out for you

Painman im going to make an appt for at the GW hospital in DC for Dr Chin. I had an appt at hopkins, but I decided NOT to go because they do NOT like to treat RSD paitents, I know the Dr you are going to see and I saw him 4yrs ago and the only thing he offerd me was a SCS (at my very first appt no less) and then he was just going to toss me to another dr because he didnt want to deal with me. Ive had to deal with multiple drs at hopkins and that is defently NOT the place to go! Crap my surgoen who set up the appt with the PM dr at hopkins actually played down the fact that I had RSD and said that "everybody has there own opinion, so i might not even have it" That was my surgoens words, and i knew right then and there that I was not going to get the proper treatment I needed. From other reviews I think the Dr in DC is probley my best shot at getting proper treatment and a very firm dx. And I know its exhausting! Ive been going at it for 5yrs now from dr to dr, but im just going to keep on fighting.

I'm so sorry and yes...I think MOST people of the non-RSD world think this way. Work comp will think that way because they latch on to any excuse possible to deny treatment. Even if it says anywhere in your records at all that you MIGHT have RSD they jump on that like, see...even the doctor is not sure. Oh...it sucks.

But hopefully this nurse or whoever is not a reflection of what your doctors think. I am amazed at how even good doctors can get stupid when it comes to RSD. And I understand to a degree that it's NOT a simple thing. We're all different, there's no conclusive test to prove or disprove RSD, it's a clinical diagnosis, etc. But why is THAT fact so hard for them to wrap their heads around sometimes? I guess they can feel almost as helpless as us at times when they run out of things to do for us.

I hope you get some help soon...I know things are terrible for you right now. Take care and good luck...you can vent any time here. We're here to listen and support.

Hey painman! Sorry that you have to deal with such stupidity, but I think we all have during our RSD journey. I had one idiot send me for that triple phase bone scan then tell me that it was normal, no RSD. He put in my chart that I cried when he told me I didn't have RSD and I was looking for someone to operate on my hand....what the??? I was upset because he couldn't tell me what was wrong and I specifically told him that I did not want surgery, which is why I went for his opinion (2 previous drs wanted to operate and they didn't know what was wrong). This happened in 2010, a year after I injured my hand and 19 years after I was first diagnosed with it in my face. I had the symptoms and finally got with the right dr, but it was too late for treatments to help me and spread had already begun!

I hope you don't have more issues with WC as I am sure it is difficult enough.

Wishing you the best,
Nanc
:hug:

Painman, I'm with TOS8- My first PM was trained at Hopkins. First of all, he didn't know what Sympathetic Independent Pain was. Second, he didn't think I had crps. Third, his NP told me there was nothing else they could do for me after LSBs didn't work except if I would consent to a SCS. And he was supposed to be the best crps in town- NOT! Don't be impressed by "Hopkins".

I jumped ship, traveled a bit more, saw a REAL crps specialist and never looked back.

Time for a second opinion for you.

Best of luck.

Oh it's so hard isn't it?! The constant mental battles on top of the daily physical ones....:rolleyes:

Remember that that call could have made by a dumb receptionist or nurse who has given you her interpretation of what she is reading....she may have read that you have CRPS, obviously not known what it is, and on reading that the bone scan was clear, may have just made assumptions. It doesn't necessarily mean that the bone scan report says you don't have CRPS.

I would suggest that you contact your main doctor quickly and ask him to verify the content of the call, and ask if any documentation stating 'no CRPS' has been put on your file, as it could affect your WC if it is not challenged immediately. Doctors tend to move quickest if they know you are determined and confident.

For your own sanity, you have to completely ignore that call and the idiot who made it. If your doctor comfirms the mad lady's view, then as others have said, find yourself another doctor, and write a strongly worded letter of complaint to the clinic. If you have a couple of good links, it might be worth directing them to the current guidelines on CRPS, and suggesting that they educate their staff. It's frightening to think that people suffering from something as vile as CRPS are being consistently let down by those purporting to be medical professionals. They would serve us better if they just declared themselves NOT equipped to treat or diagnose (or comment on) CRPS.

Good luck!

Bram. :grouphug:

Amen, they should lose the arrogance and admit when they are clueless!

It's just SO awful to hear of all these awful doctors ... :(

Keep looking until you find a good one - they are out there!!!

Which doctor would you be seeing at Hopkins? I went there for a few years back around 2006 or so. There was no argument over my diagnosis, even with a previous bone scan. We tried a few blocks even though they failed in the past, changed meds around and yes they did offer the SCS. When I declined they kept me on for pain management, but they WILL try to get your primary care doctor (!!) to take over writing scripts so they don't have to. My PCP sure didn't want to take on that burden.

imaginary medical expertise
 

I saw this once and I truly believe I should hang this quote on every exam room door as I leave.

My disease is more real than your imaginary medical expertise.

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.

Hi Painman
 

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:hug:

Ok im back and here is my assessment of "them"
 

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.

Hi painman
 

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.