When I started this journey I took someone with me to my initial meeting (because I knew I wouldn't hear everything they would say), I also took a note book with me to any meeting related to my dx and if they weren't able to answer my question they were able to direct me to who could. I also have a folder that has all reports from all the scans and tests that I've had that I also carry with me - so should someone ask, I can provide them that information right then and there. It maybe overkill on my part, I just don't want there to be a delay in them getting the information they may need from someone where they have to request the information.

Please know that whatever you hear you have a sounding board here where others have experienced what you may need to experience and all our experiences are unique but our experiences can give you a range of what your experience might be like. Please let us know what you hear and stay strong.