mRS: modified Rankin Scale, MIRS: Muscular Impairment Rating Scale, MRC: Muscle Power Scale, 6MWT: 6 Minute Walking Test, NP: not possible to asses, ND: not determined, *Interrogating P1, she is self-secure that her symptoms started at 36, but the neurological team thinks that the disease started during adolescence, since she had many signs at 36, including oval pallor and temporal atrophy that needed to appear early in the patient’s life.