Quote:
Originally Posted by Angeloffire73
Hi my name is Lisa, I have had RSD for going on 13 years. I am full body with organ involvement. I am also a Mentor for the RSDSA. I'm sure you know that there are 2 types of RSD Type I and Type II which is called Causalgis, meaning burning pain. That name was started back since world war I. On another note I agree that this issue of changing names needs to stop. It confuses patients and doctors. Like we need more of that right? I am in the process of needing a orthopedic due to the RSD causing severe Osteopenia & Osteoporosis, which due to being left untreated has caused bone disease. I just love when they say, " You need and Ortho ASAP!" Really Cause I've called 9 Orthopedics in the state of Louisiana and I get the same response! You have what? What is RSD? I then reply thanks for you time but I don't have time to pay a visit to teach a dr. But I do mail packets of info to them with a note if you feel that you can help me out after reading this info please contact me. LOL If I am gonna teach about RSD it won't be on my $.
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Hi Lisa! Yes, I do know that there are two types of RSD/CRPS. I read that Causalgia goes back to the Civil War.
Sorry to hear about your Osteopenia & Osteoporosis. I know what you mean about the Ortho's. I went to soooo many of them trying to figure out what was wrong with my hand. I had one of them wiggle my thumb around (which hurt like crazy) and say, "it hurts too much for me to know what's wrong with it." Really?? I looked at my husband, who sat there in amazement, and said "did he really say that?" Needless to say, that was my last visit with him. Finding a dr who knows anything about it is a challenge in itself, then can he/she treat it...another challenge! Luckily I finally found one, but I was too far gone with my hand and spread began (I was initially diagnosed with it in my face in 1992 and injured my hand in 2009).
I do not blame you for not wanting to use your own $$ to educate these dr's who should know something about it to begin with.
Can I ask how you knew your organs were affected, aside from the obvious pain?
Thanks!!
Nanc