Based on muscle biopsy, high CK, abnormal liver enzymes, and lack any other objective findings. His symptoms are fatigue, inabiltiy to exercise, maintain weight
or muscle mass.
As a Family physician, I am extremely frustrated at the respose of professional Pediatric Neuromuscular Specialist lack of empathy or concern to long term prognosis as there are not any known etiologies, thus treatments.
Probably just venting, here, but suspect I am not alone.