I posted once before with no responses. When even the top specialists you've seen tell you that there's something definitely going on, they don't know how you're still functioning and keeping a sense of humor, but they have no idea how to help you...what do you do?
I am a single parent with a daughter who has similar and quickly progressing issues that are affecting multiple systems and making daily functioning nearly impossible for both of us. I am barely able to work so that we can have medical coverage and a means for living. We've both seen well over 10 specialists each, been looking for answers/getting worse for over 4 years, and are very frustrated with how down right difficult it has been to maneuver our way through the medical system (from getting appropriate referrals, to getting medical records sent anywhere, and so on...).
When the most respected specialists tell you they honestly can't help, what is next? We are clearly deteriorating. (Even the Doctors who want to help, but don't know how, openly acknowledge this.) The closest we've come to an answer is some type of rare autonomic nervous system dysfunction. I'm not sure what to do. Any ideas where to get help when everyone else has said it is too much of a mystery for them?