No worries. I hope they publish a case study article as a clinical treatment guide for the next cases. Your kind of situation exposes one of the current inade

No worries. I hope they publish a case study article as a clinical treatment guide for the next cases. Your kind of situation exposes one of the current inadequacies of the clinical medical profession: falling through the epidemiological cracks of rare diseases and syndromes. There is a finite amount of evidence-based medical knowledge and an inability to rapidly test and adapt to infinite presentations that don't fit neatly into an "average" common case. Perhaps we need both cheaper lab tests/diagnostic procedures (not Theranos in execution but close to it) and tens of thousands more "detective" MD researchers meeting up with clinical side of the healthcare industry to elucidate the unknowns and the unexplained rather than shrug of patient concerns lacking clear explanations. Lastly, clinical MDs should aim to never forget their roots by publishing more.