I hope someone on here can help me or have experienced this disease.
I have a 7 year old daughter that a year 1/2 ago started experiencing acy mucles in her legs arms and neck.Nothing major just aggravation. Had her checked and her ck levels were 60000 and her liver enzymes were 450. she was then diagnosed with rhabdomyolysis. This has been going on off and on now with elevated ck levels from 500-35000..
no worsening pains just same symptoms but are not everyday complaints.
we were referred to a genetic specialist who did a genetic test and said she had gsd v known as mcardles disease..everything i have read says she would get these horible cramps when doing any exercise but thats not our case.
she can perform normal in gym with no complaints ride bicycles with no complaints and then sometimes she will complain they hurt a little but never enough to cry.
last week she did no exercise beside normal recess at school,had no illness but came home complaining her arms neck stomach and legs were hurting but still went about playing. we went ahead and had her checked because she told us several times they ached but not severe and her ck levels were 34800 and her ckmb levels were 51.
is there any diagnosis similar to mcardles disease that could cause this or is this normal for mcardles