What should I do now?
Posted: Wed Jan 13, 2010 8:27 am
Early in my wife's diagnosis, two of her neurologists were honest enough to tell her the CRAB drugs would provide little if any relief, and the side effects could be worse than the disease. We made a conscious decision not to use them, and to this day she does not regret that decision.
Ten years later she is bedridden and cannot move anything below her neck. She has a colostomy bag, an in-dwelling catheter, and a feeding tube.
Believe it or not, she is still very smart and mentally active. (Her MS seems to only be spinal). With assistance, she shops on ebay, works on her novel or screen play, helps pick colors for renovating our house, etc.....
I have never known anyone with more courage.
I am very excited about CCSVI, but I am worried she may be too far gone for the Liberation treatment to provide any relief. I have told her a little about it, but she is still recovering from her last surgery and not in a mood to even see the video. (Really hates doctors.)
My impulse is to take a "wait and see" approach. I live in New Orleans, so it may be a long time before the technology to even test for it is available here. But what is interesting is she has had unexplained anemia, trouble swallowing, etc...sound familiar?
Should I see if I can get her primary to send her to a cardiovascular surgeon now? Or just wait and see until CCSVI clinical trials are finished?
Advice, suggestions, appreciated.
Ten years later she is bedridden and cannot move anything below her neck. She has a colostomy bag, an in-dwelling catheter, and a feeding tube.
Believe it or not, she is still very smart and mentally active. (Her MS seems to only be spinal). With assistance, she shops on ebay, works on her novel or screen play, helps pick colors for renovating our house, etc.....
I have never known anyone with more courage.
I am very excited about CCSVI, but I am worried she may be too far gone for the Liberation treatment to provide any relief. I have told her a little about it, but she is still recovering from her last surgery and not in a mood to even see the video. (Really hates doctors.)
My impulse is to take a "wait and see" approach. I live in New Orleans, so it may be a long time before the technology to even test for it is available here. But what is interesting is she has had unexplained anemia, trouble swallowing, etc...sound familiar?
Should I see if I can get her primary to send her to a cardiovascular surgeon now? Or just wait and see until CCSVI clinical trials are finished?
Advice, suggestions, appreciated.