I also plan on donating for science and others. I think that one of the concerns would be the length/strength of medications I have been on for so long. The way I see it is if my body can help in someway I'm all for it

I'm with you all. I'm giving up all my organs that they can use. I figure I don't need them and maybe someone else can have a life with them. In so far as giving someone rsd. I kinda think that they would rather live with that possibility then die waiting for something else. I could be wrong, but if it were me, I would take the chance. My biggest concern would be the amt of drugs I'm on. Whoever gets any part of me is going to have an interesting time.
Hugs
mary

This is such an intriguing subject. I have been listed as an organ donor for many, many years. I have not considered that the RSD might be somehow passed along to a recipient. How I would not want to be responsible for that!

This has given me cause to think. For now, I believe I will continue to be registered as a donor.

Mike

Hi Mary and all,
I rather agree with this......if it were me or my family member, I would rather have the risk of getting RSD than to die from organ failure. I think they test the organs to make sure they're "healthy" to be used. There is NO evidence that RSD is contagious. Even if an organ is affected (as long as it's still healthy) the damage would have been done by OUR brain signals sending faulty messages to the organs, not the organs themselves.

I am seeing Dr. Timothy Lubenow in Chicago this Wednesday. He has done lots of research into RSD at Rush University and treated many patients. I will ask him his opinion while I'm there and let you know what his feedback is.

Thanks to all for the interesting dialogue and points of view. I can see and relate to each one, frankly. I have always wanted to be an organ donor and would feel very badly if my RSD made that impossible. Thanks again!!

HI all!! I survived my appointment with Dr. Lubenow in Chicago. I asked him about organ donation (he has researched RSD with Dr. Kirkpatrick and several other big names in RSD) and he said, "It shouldn't be a problem". I'm taking that to mean it is ok as long as our organs are still in good shape. I just wanted to update!!

Thanks, for the update.
It makes sense that we can still donate. My lungs and heart are effected. I get tested and both are structurely fine. It's the communication between the brain and organs via the sympathetic nerves that is messed up due to the RSD. I'm no doctor this is just the way I understand what's going on. If our organs are damagd due to other conditions that' a different situation.
Take care,
Sherrie

Since, all of this is hypothetocol at this point, but still considering the importance of this question, I would like to have some input here. My theory on this is that since we really DON'T know the cause of RSD/CRPS or the consquences of the donation of one of our organs, I suggest we let those who are more healthy without a diagnosis that is questionable, carry the torch on this one. I can not imagine what it would be like for a desperate organ recipiant to receive an organ and suffer the consquences of this uncurable disease. You may argue that it should be a personal choice, but clearly there should be a standard set to resolve any liability.
When I first was diagnosed, I was sent numerous letters requesting my cadaver upon my death, for research for RSD/CRPS. Maybe, just my opinion...this is the path we should champion.
Here is a link for more information on RSD/CRPS. Again, just MY opinion.


http://www.ninds.nih.gov/disorders/r..._dystrophy.htm

What is Complex Regional Pain Syndrome?

Complex regional pain syndrome (CRPS) is a chronic pain condition. The key symptom of CRPS is continuous, intense pain out of proportion to the severity of the injury, which gets worse rather than better over time. CRPS most often affects one of the arms, legs, hands, or feet. Often the pain spreads to include the entire arm or leg. Typical features include dramatic changes in the color and temperature of the skin over the affected limb or body part, accompanied by intense burning pain, skin sensitivity, sweating, and swelling. Doctors aren’t sure what causes CRPS. In some cases the sympathetic nervous system plays an important role in sustaining the pain. Another theory is that CRPS is caused by a triggering of the immune response, which leads to the characteristic inflammatory symptoms of redness, warmth, and swelling in the affected area.

I agree with DianaA. There just isn't enough known about RSD to donate organs to living recipients. RSD is too awful to risk giving to anyone. The option to science is a noble one. I applaud everyone who could do it. Because I couldnt and won't do it. You are just a giving group of people.
Hugs, Denny