Fortunately, the Internet allows you to research medical issues and to become a very educated patient. Take full advantage of that, then find the best doctors for your condition and get multiple opinions. Doctors only know what they know and they have biases favoring one treatment over another. It's your body and you know it best, so don't let one doctor totally drive the treatments prescribed.
I know when I had health problems in 2002 that restricted my cycling and other things I enjoyed doing, I became depressed. I was obsessed with finding a cure and was willing to take any reasonable risk to get my life back. Fortunately, I did find a cure and I am thankful for that everyday that I wake up and can look forward to an active day of cycling, hiking or whatever.
Please keep us posted on your progress. I will be pulling for you to find a solution that allows you to continue doing the things you love. It will be a challenge, but here's hoping you succeed.