In reading all the posts this morning, it has become clear to me that those of us in the MS community, need a road map or a owner's manual for navigating with insurers. If I want to get from my house to another several states away, I can type in an address and get a detailed plan: turn left, go 2 miles, turn left on County Road, etc, Yet if I had a problem with an insurer, as so many do, I would have no idea of where to turn. Where is the starting point, if that doesn't resolve the issue, then what, and what next? Appendices in my fantasy manual would have a list of drugs, companies, and phone numbers for their problem/solution hotlines. There would be spaces to keep other important numbers in one place for neuro, pharmacy, infusion center etc AND plenty of pages for note taking with columns headed by date, time, name of person spoken with, Qs asked and answers given. Perhaps this would need to be a binder with room to add more pages as necessary, given that the problem is so long standing and ubiquitous.
I haven't had to go up against bureaucracies in a very long time, but I don't do it well. My first few times were not successful experiences until I learned to carry a clipboard with me, start by noting the date/time/person before I began asking my questions. This helped organize me, gave me a record, and dissipated some of the cognitive fog that descends when I am stressed. I don't think it was my imagination that this improved not only my experience but the quality of responses. It is so hard for us little rabbit foo-foos to navigate the big wild world out there; we need all the support we can find!