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Ask HN: What should you do if you think you might have a rare medical disorder?
3 points by sp527 on April 5, 2018 | hide | past | favorite | 4 comments
Context: have seen PCP, multiple specialists, taken a lot of blood tests, and have done considerable research, without receiving a concrete diagnosis (in the US). Chances are I'm experiencing some undetectable auto-immune or poorly understood condition (like CFS).

I've become incredibly frustrated and I'm curious if anyone here has ever found themselves in a similar situation and figured out a reasonable strategy to navigate the medical system.

Should I be considering Mayo Clinic? Is there any online platform where I can poll a lot of specialists all at once? Other options worth considering?



Best of luck. Don't have any suggestions to offer but I've upvoted for visibility.


Thanks! I appreciate that.


Might be worth re-asking on a few subreddits. /r/findareddit may be helpful if you do that.


Same.

Good luck




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