Photobug50
One thing we have learned in the past 2 years is you have to be really critical of these doctors and question everything they do and say. We double check and sometimes triple check what they suggest or recommend. We also spend many hours researching on our own. Some of my doctors don't like this but as my mother said "tough toenails".
As my case gets tougher and tougher we just get more determined. You see your doctor thinks about your case for 20-30 minutes every 2-3 months, I think about it 24/7 because I have to live it.
Mike