Pediatric necrotizing Myopathy

[kimmie647]

I am a mother of an otherwise healthy 17 y/o male who has been recently diagnosed with Necrotizing myopathy without inflammation. 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.
-Kim 2-19-11

[Necrotizingmyopathy]

Have you tried Johns hopkins myosotis center?

[Necrotizingmyopathy]

Hi. I have been diagnosed with autoimmune necrotizing myopathy. Have you had any luck with any treatments?

[lisaob1]

hi your so not alone,my daughter is 16 and has a rare centronuclear myopathy i have been told is the first of its case,although i cant give you any help or advice for you or  your son i just wanted to let you know you are not on your own,i wish you all the best an if ever you need to talk or just have a vent and let off steam id be more than happy to listen,i wish you all the best