Hi Austin,
I am so sorry you are going through this mess. I have a 19 year old son who is my rock and you have brought tears to my eyes especially with your last message about friends and family. My son and I have gone through the same thing. We worry about each other but it sounds like you are so alone. Where are you located? I am in Levittown, PA 13 miles NE of Philly. I too am on the "waiting list" with Dr. S. too for Ketamine so I know your pain. I have full-body RSD and Fibro, Rheumo Arth., Osteoporosis too so every day is a trying experience but I feel so bad for you especially because you are so young for this mess. I don't know if you are religious or not but I have become much more so in the past 3 plus years and when I am down I really do rely on prayer to help. If you are local to me I would like to see if you can see a great chiropractor who I have been seeing in Hulmeville for almost 2 years and she has helped me tremendously with twitching, discoloration and allover body pain. Please let me know. Send me a private email back so I can talk to you about it. I am very worried about you because I feel the same way too. I will keep you in my prayers.
Take care,
kathy d.
Quote:
Originally Posted by LordWood
My name is Austin Wood i am 18 and i have been dealing with RSD/RND for over 5 years now. I have tried every medication available as well as all treatment procedures except one so far the Ketamine Coma. For most youth i strongly recommend Dr. Sherry of Children's Hospital in Philadelphia i have been to his treatment 3 times and other than my last time in the program have found it by far the best of all other procedures/medications. But i warn be prepared to go through worse pain than your in now to get better. The treatment is a VERY intense physical therapy so much that adults are not able to under go the therapy because there body's are not able to handle it. It is basically a switch though adults have been found to have much success with nerve blocks where as youth it makes there RSD/RND worse. My RSD/RND occurances are as bellow:
2003-Left Foot
2006-Both Knees, Hands/wrists & Chest Wall
2007-Nerves Directly Around The Heart, Stomach
2008-Both Eyes
For my first 2 treatments with Dr. Sherry My 2003 & 2006 Occurances have gotten to the point i can handle and function normally with them. And if it were not for the 2007 & 2008 occurances especially of the nerves directly around the heart i would be functioning quite ok. But as fate would have it the RSD/RND continues to attack me relentless. My next and unfortunately last resort is to try the Ketamine Coma with Dr. Schwartzman, which i am currently on the waiting list for. For me the RSD/RND has basically destroyed my life, my education and college dreams are totally obliterated and life as itself is beyond what words can describe. The attacks that occur due to the RSD directly around my heart are unbelievable. I am in and out of the hospital but because of my youth lucky enough that it is not damaging my heart. But as i have been warned as i age this will turn to a severe problem which seems small in my view as the pain i am experiencing now is far worse than anything i ever thought possible. I each day suffer from small attacks which are constant and than the usual mediums and large that come along whenever they wish to happen. These attacks mimic strokes and heart attacks as well as with the larger cause complete paralysis and you become unable to breath. You can feel each nerve in your neck trace up in severe pain and it stops all air flow. Than after a period of time which keeps getting shorter after each one i get what i call an ultra attack and they land me in the hospital. But of course nothing helps and nothing can be done the attacks just get to control as they wish and run rampant. Thats why my last hope with this Ketamine coma means everything as this treatment either works or does not.
Alot of people ask me how i continue on and basically i have no clue the human body is not ment nor able to endure with such basis i should either be dead or completely have lost my mind so far but instead i stager on each day continuing on in the never ending torment. Each time i went to Dr. Sherry's program i was in search of someone who was at least remotely in understanding but what i find is those which are lucky enough to have it once or twice go through the program and have a normal life.
I thank you for your time and am more than happy to hear the stories of those fellow RSD/RND members. If anyone has gone through the Ketamine coma i am very much interested in speaking with you.
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