I just saw this for the first time. I have no experience regards it but couldn't read and not reply. Have you seen someone for a second, third, fourth opinion? How is your mental state? It must be very difficult for you to go through this. If it is a permanent thing, you need to find a way to deal with it and accept it. I know it doesn't sound achievable but it is the best thing you can do for yourself to get through it and move on. Remember, YOU are not your BODY. Please look after yourself mentally as well as physically.