[painman2009]

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

[tos8]

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.

[catra121]

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.

[Nanc]

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

[reluctant@thetable]

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.

[Brambledog]

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

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.

[AZ-Di]

Originally Posted by Brambledog

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

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.

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

[SloRian]

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

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

[pg2005]

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.

[Vrae]

Originally Posted by painman2009

..any one having similar issues please tell me how it worked out for you

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.