Dr Maciejewski is world class. You just don't get any better and you should rest easy that he will make a very thorough and careful DX. He serves on the National Board, has presented internationally and is honored and distinguished for his work at the forefront of this disease. Do not second guess or mistrust yourself in making the choice to see him. He runs a program in translational hematology at a Center of Excellence. And he can help you with clinical trials if that is the direction you need to go. He has the resources to do whatever it is that is needed to best treat you.
I am his patient but admittedly I am not a very good patient. He is a great doctor. I just happen to be an avoider when it comes to adversity. I know that burying your head in the sand is not the solution. But, You sound like you will be a good and active patient in the process -- that modus operandi should serve you well in your journey. I know it is difficult but keep smiling
~Joni