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-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   The Doctors feature RSD (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/196022-doctors-feature-rsd.html)

StillCrazy 10-21-2013 09:18 AM

The Doctors feature RSD
 
Today 10/21/2013 on The Doctor's (NBC) they will feature a lady with RSD. So glad this is a national show! I've called several family members that have never really understood what RSD is so they can watch!! Woot!:D

Nanc 10-21-2013 09:35 AM

Hey there! I was just getting ready to post this :D I just watched it online and am recording the episode coming on today. So happy to see them addressing this!!

birchlake 10-21-2013 10:48 AM

I just finished watching it. It was shared on Facebook by one of the CRPS websites.

It was a pretty good (but short) interview with Dr. Travis and also commentary from this patient's pain management doctor.

Good awareness of this terrible condition!

allentgamer 10-21-2013 12:29 PM

It was cool that they talked about spreading, most doctors dont believe it spreads. It was a really good piece on RSD!

Brambledog 10-21-2013 04:06 PM

Thank you!!

Anyone have the link?

Bram.

fbodgrl 10-21-2013 04:19 PM

While I was glad to see it covered...I was unimpressed.

It did show some good information, but it fell quite short IMO on explaining quite a bit as far as symptoms and different things that can be involved (pain brain, body temperature issues, etc). I think they would probably need a longer show instead of a snid bit to really get things explained.

Nanc 10-21-2013 04:54 PM

Quote:

Originally Posted by Brambledog (Post 1023840)
Thank you!!

Anyone have the link?

Bram.

Hey Bram!

Try this: http://www.thedoctorstv.com/main/content/RSD_Battle

There are several little videos there showing each portion of the story.

Nanc
:hug:

Brambledog 10-22-2013 04:29 AM

Thanks so much for the link Nanc :)

I thought this was good in terms of them actually spending some time on it, and really talking to Kathy. Yes, they could have gone deeper into the range of symptoms we can experience, but then they might have lost the human element to the story, and lost the audience's interest. Sadly, you need to get people hooked in before you can bore them with the raft of CRPS symptoms! It is a lot to take in, and tbh I think ordinary people just struggle with too much medical info.

This is just my opinion, and not intended to insult anyone ;) but what did annoy me is the fact that throughout the whole show, the presenter only ever referred to it as RSD, never as CRPS. Kathy's pain management doc did, but it was only once. It's so important that the new name (not so new - quite a few years now!) is recognised and used more in the US. I know a lot of folk like the old name and don't see why it was changed, but there were sound reasons - they didn't just decide it for the hell of it. It is widely acknowledged that the confusion around the two names means that research often isn't picked up on and compared as much as it should be. We all need to embrace the term of CRPS and use it much more - it's the name used more and more in other countries, and the name that will be used internationally going forwards. We have to look to the future and try to find solutions for us, not keep clinging on to the past. The US is such a big player in global medicine, and are the main country still predominantly using the term RSD.

I don't mean to offend anyone, but I found this so frustrating. When I was searching for the link I couldn't find it anywhere when I used the term CRPS, only RSD, but so many countries define the condition as CRPS now... CRPS had so many names in the past, and the new name was debated, decided on and accepted by the medical profession, not by TV presenters or politicians.

I'm so glad to see it discussed as a whole body disease needing whole body treatment. What they were saying about food is so true, and I'm glad they mentioned that you do need a whole team looking after you who are in contact with each other. I think we all wish we had that! If only they would all sit down together once in a while and figure a way through for us - it would probably reduce our suffering much quicker.:rolleyes:

Thanks again.

Bram.

Nanc 10-22-2013 09:21 AM

Quote:

Originally Posted by Brambledog (Post 1023953)
Thanks so much for the link Nanc :)

I thought this was good in terms of them actually spending some time on it, and really talking to Kathy. Yes, they could have gone deeper into the range of symptoms we can experience, but then they might have lost the human element to the story, and lost the audience's interest. Sadly, you need to get people hooked in before you can bore them with the raft of CRPS symptoms! It is a lot to take in, and tbh I think ordinary people just struggle with too much medical info.

This is just my opinion, and not intended to insult anyone ;) but what did annoy me is the fact that throughout the whole show, the presenter only ever referred to it as RSD, never as CRPS. Kathy's pain management doc did, but it was only once. It's so important that the new name (not so new - quite a few years now!) is recognised and used more in the US. I know a lot of folk like the old name and don't see why it was changed, but there were sound reasons - they didn't just decide it for the hell of it. It is widely acknowledged that the confusion around the two names means that research often isn't picked up on and compared as much as it should be. We all need to embrace the term of CRPS and use it much more - it's the name used more and more in other countries, and the name that will be used internationally going forwards. We have to look to the future and try to find solutions for us, not keep clinging on to the past. The US is such a big player in global medicine, and are the main country still predominantly using the term RSD.

I don't mean to offend anyone, but I found this so frustrating. When I was searching for the link I couldn't find it anywhere when I used the term CRPS, only RSD, but so many countries define the condition as CRPS now... CRPS had so many names in the past, and the new name was debated, decided on and accepted by the medical profession, not by TV presenters or politicians.

I'm so glad to see it discussed as a whole body disease needing whole body treatment. What they were saying about food is so true, and I'm glad they mentioned that you do need a whole team looking after you who are in contact with each other. I think we all wish we had that! If only they would all sit down together once in a while and figure a way through for us - it would probably reduce our suffering much quicker.:rolleyes:

Thanks again.

Bram.

Hey Bram, glad the link worked for you. I was happy, for the most part, with the story. I thought that they spent more time on this one than they do on some other stories. Yeah, I wish they would've dove in a little deeper too.

It is funny that you talk about RSD vs. CRPS. I was showing the story to my husband last night and said to him that I was shocked that they used the term RSD so much. I am one of them that uses that term more than CRPS. It is because RSD is what I was diagnosed with over 22 years ago and it is also the term my doctors use too. Old habits I guess...

I noticed Kathy's dr and Dr Prager both used CRPS and Dr Stork used RSD. I do wish Dr Stork would have explained the names as it can be very confusing to those not familiar with the name changes.

And to have a whole team helping you?? How can you make that happen?? Finding a good PCP AND a good PM dr is near impossible!

Nanc
:hug:

RSD ME 10-23-2013 09:41 PM

Thanks so much for this information and link everyone. I just saw it and was so glad to see people on tv acknowledging this horrific disease. I once saw Paula Abdul on I think a Dr. Phil show a few months back. It was good too, but I don't know what the link is. I was glad that she shared her experience with RSD too. The more people know about it, the better chance that a cure will someday be found.


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