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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Sharon,

The Graduation was nice, Thank you! My Nephew was awarded a Scholarship and the Congressional Merit. Way to go!

I thank you for being honest. I am the type of person that needs the worst case senario, so that I am prepared and informed.

What type of Doctor gave you the Dx? I want to seek a second opinion, but I think a Neuro is NOT the answer.

I am a little concerned because the bottom line of RSD is you lose stuff at the injury site. Well mine is in my neck. That is a little scary considering that I have already lost all hair at the site. I know that my ligaments are damaged. What kind of treatment or outcome will there be for a Neck RSD? I hear people losing limbs left and right Or multiple surgeries. If you hear of someone that suffers with RSD in the Neck please tell them to post me k?

"THIS IS A ROYAL PAIN IN THE NECK"

I also have skin spots that are sometimes (they are brown on outside and red in the middle) painful and itch (on left hand, arm,& leg and on the right hand and leg). They keep getting bigger and bigger. The hair does not grow at those sites either.

I have odd bumps in my face and ear lobe, they hurt bad, even cause tingly feeling from ear to lips when touched.

I have talked to Doc after Doc about this stuff and it was dismissed. I even had a Neuro tell me he was not a bumpologist, even though my PCP referred me to him for the bumps.

I understand that there is a chance that I could go into remission, but are there numbers to put to that? Like you have a 20% of being disabled or 20% chance of remission? Resources are real ify! Since every case is different are we all really alone? I mean with Cancer, you know that Chemo and Radiation work for the good majority and it has been done millions of times, but with RSD, is this all experimental? Do we just pray that sticking a needle in my head and numbing my melon will help? Is there a natural approach? Or a Voodoo approach? (a little comedy for ya)

I would also like to know about the Window for the Successful outcome. It seems like the DX time frame is just around 3 years. Is this Block going to even help? Have I lost my sucessful outcome window? I consider myself a very strong person. I never complain. I just have learned to deal with my pain. As you know 3 years without a DX can either make you or break you. So would I be getting the blocks in vain?

Do you have kids? I am have worried about them. I feel like at some point I will not be able to hide this from them and how will my Daughter react? I guess that will come at a later time.

Both my Craniofacial Doc and PT think this was caused from an Head on Collision I had when I was 16 or 17. I am 32 now. I have been chronically suffering since 2001. I was only 28. Too imagine I should of been getting my groove on, but instead I was in and out Hospitals with male nurses gettin their groove on. One day I will tell you about my perverted male nurse.

Thank you from the bottom of my heart. I am so lucky to have great gals on my side. Someone has really given you and Julie the power to uplift with your words.

Have a great weekend,
Kim





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