UGH - despite me writing a letter laying out all the reasons why they should order the blood test before his specialist appointment, the regular neurologist still wouldn't do it! I'm so beyond frustrated. This poor guy has to take two naps a day just to function as it is!

He belongs to the same large staff-model HMO that I get my healthcare through (ex used to work for them) and they are great at routine stuff and emergencies but can be bad at anything out of the box. My son had similar problems with them getting his own less-rare disorder diagnosed. As I approach Medicare age I'm thinking more and more about maybe changing to a (more expensive) plan that lets me go anywhere. Not that I need it now, since I'm quite healthy and can manage much of my own stuff. But having seen so many people I know go through cancer treatment recently, plus one friend get a heart transplant, I'd like to know I'd have the option to go where I wanted if something bad or rare did happen to me in the future. Staying with my HMO in a Medicare Advantage plan would be the most economical choice (especially in the next few years, since I'm still working my income puts me in a bracket where I pay more for Medicare). My costs would actually go down a fair bit from what I currently pay for my high-deductible plan and the deductible would go away. If I choose the more expensive course my costs would probably stay the same until I retire but coverage would be better. I have pre-existing conditions that make it important that I choose what I want the first time out, as I may not be able to afford to switch in the future (they can rate you for pre-existing conditions if you change plans more than 6 months after turning Medicare age. )