[flippnout]

This is not to jump all over VICC as he is a long time member here no disrepect VICC. This is my own opinion. I have had this for several years RSD/CRPS along with true Nuero TOS and I must say I have a diffrence and must say I do not agree that RSD must only be cold and in your view if it is warm than it is not RSD, if I'm quoting you wrong Vicc sorry but that is what I picked up.
My thoughts from alot of reading is that RSD presents it self diffrently like there is no one test to prove RSD, I have a feeling of heat and cold Vicc now it may be because of TOS and RSD togather along with lets throw in my symphatic nerve cut, so I must have AC on very cold but not have cold air touch me or be touched over and over.
I just feel it is wrong to throw a opinion out here when there is no proof of it, sorry I'm not jumping all over you Vicc but it should be said when we all do this, that if you are not a doctor you should state in bold print this is your opinion only that should go for all of us. There are new people that come to this site and when they see some one who has been here a long time may think that advise is right. It seems there are alot of thing out here online about RSD/CRPS and that is part of the problem with are condition too many opinions and not enough research.
I know what you are doing Vicc you feel needs to be done because there is not enough research into this, not profitable for drug companies, even though they get a ton of money from all the meds we are all on, see RSD/CRPS is difficult look at all the diffrent meds we are on seems like no two are the same. So Vicc you may be right on some things but it is hard to say you are-you are not a Doctor (again not jumping all over you) so you cant be saying you theory is the only one. Now you can say your opinion leads you to this hypothosis sorry for my sp. I know there are RSD groups and foundations but where is the research for this? It is a rare disorder and sorry folks just my point if there was more people with it then doctors would all be fighting for research money for it.
Sorry Vicc again not downing you but just stating we all need to find a doctor we trust for our condition and ask questions and get answers, and as it is not alot of docs know about it so we must learn togather here but say it is our opinions till we have hard documatation as fact first.
JUST MY OPINION

[Vicc]

Flippnout,

I am working on replies to Tayla and Desi, but need to respond to you quickly because your reply is exactly the sort of thing I felt could happen if I let Tayla get away with misrepresenting my words.

I do not agree that RSD must only be cold and in your view if it is warm than it is not RSD Your reply is based on what Tayla said that I said; not what I actually said. Please go back and read exactly what I said about warm v, cold RSD and the warm/cold RSD you describe. I am not going to repeat them again.

if I'm quoting you wrong Vicc sorry but that is what I picked up. That is what you picked up from reading what Tayla said I said.

I have a feeling of heat and cold Vicc now it may be because of TOS and RSD togather along with lets throw in my symphatic nerve cut, so I must have AC on very cold but not have cold air touch me What you describe is not typical of RSD and may well be the result of a combination of TOS, RSD, and surgical sympathectomies. When you combine medical problems (and sympathectomies do cause medical problems) new and different signs and symptoms can be expected.

you are not a doctor you should state in bold print this is your opinion only that should go for all of us. The only thing I did not do was put those words in bold print, and as you say, no one does. We don't need to: This forum is not titled Ask the Doctor; it is in information and support forum for patients.

'nuff said...Vic

[Curious]

suggestion:

when replying, use the quote button . you can add your replies in color or bold if you want to interject in the post you quoted.

there is also a multi quote button.



it gets very hard for everyone to follow on a thread when the readers aren't sure who is replying to whom. (i probably mixed up my who and whom...sorry). it can also help with any possible misquotes.

hope this helps.
if not, ignore me.

[kimmydawn]

Thanks, curious. That's very good advice.

Vicc is right in that it's a given that this is a "peer support forum". It's stated in the guidelines and in the TOS...both of which members view and agree to upon membership.

I appreciate how this thread has gone in that there are opposing views being stated, stated with passion, and they're being stated respectfully without flaming or personal attack.

Any member here can state their beliefs as such *within in the guidelines*...their beliefs and findings based on personal experience. Any member can question the same *within the guidelines*. It doesn't make either wrong in that we're highly individual in our illnesses...even with all the basic similarities.

If you feel another is giving "bad advice", please share your own and maybe there can be a peace in that anyone reading will have a "fuller picture" to take to their doctors or decide for themselves.

Also, please remember that if there's a member you find constantly "rubbing you the wrong way" or interfering with your experience, ignore can be a good option in this self-help, peer support forum.

Thank you all always for your care because that IS what I see as the common denominator here throughout...massive care for others.

KD

[kimmydawn]

Originally Posted by Steff

Hi- I do not have RSD. I have PN maybe, or neuropathy from prolotherapy shots. I had them injected into feet that had been operated on 20 years ago and started to hurt. Something went terribly wrong. It was the wrong procedure for the wrong person/pain. I now have burning, stabbing, pins and needles, no numbness pain in both feet, legs and up to my spin sometimes. No color or temp change except for one inch on my ankle where there is a growth of tissue and it feels a little warmer, but has been that way since day one of the injections. If I wouldnt have had the injections, I wouldnt be on the computer right now. It has put me in a wheelchair the pain is so bad. It gets worse to walk or to hand my legs. No change with temp or touch unless you push hard and then its awful.
So what do you think?
steff

I just wanted to gently remind everyone what the original topic here is...

KD

[tayla4me]

Steff,
I apologise that your thread has been hijacked, it isn't fair and I do hope it won't prevent you from asking any other questions.
I guess all you really wanted to know whether you must have colour and temperature changes to be diagnosed with RSD.
It seems that from the answers here that the answer to that would be probably no you don't. It seems there are many and varied combinations of the multitude of signs and symptoms of RSD and no two of us have the same.

I hope you are doing well and getting some help.
Tayla

[kimmydawn]

I'd very kindly tried to nudge this conversation back the the support of the original poster, but there was continued posting because there are some very passionate views.

Due to that, I've created a new thread for the continued disussion of vicc's hypothesis. http://neurotalk.psychcentral.com/sh...ad.php?t=27374

It would be appreciated if further posting to this thread be in support of the original poster and topic.

Thanks!

KD