I have read these stories with much interest, as my journey overlaps with many of yours. Mine started at age 51, 5 years ago. I am hearing you say doctors don't have time to research, there are so many mysteries, hard to diagnose etc. I admire those you with the positive attitude to make the best of it and try to live life to its fullest. My problem is, at my sudden crippling onset 5 years ago, accompanied with an infection/UTI, only bloodwork was done (and nerve conduction study).Then "let's wait & see". Now after 5 years, I am tired of doing nothing. I have moved to a bigger city hoping for better medical care. I'm ok if I'm told so many can't be diagnosed, but let's test me first! I had to beg for a sural nerve biopsy, which was done last week, while my neurologist said an MRI won't tell us anything, so we haven't done that less invasive test. I don't want to bike or run another marathon, I just want to walk and carry a grocery bag at the same time, and help my older husband. Getting off disability and working again would be a big plus. I hear many of you talk about skin biopsies, plasmapheresis, and other attempts to diagnose and maybe treat (bonus if there would be a cure). So I pulled teeth to get this painful ankle nerve biopsy, and I await results then hope we can try something else, but why won't doctors help look for causes rather than tell you to live with it, if there's a chance a reason and help may be found?