hello gang new to this group but not to moyamoya,looking for someone with a similar story or someone to chat with,i have an 18 year old girl with moyamoya she has been thru chem,radiation 3 edas proceedures with 4 strokes ,now she is having vascular issues . she is falling for some unknown reason,not blacking out ,not seizures,all tests are fine,her feet just won't hold her up,it started outlasting a few mins ,,then started to last days..now into weeks numerous doctors have been consulted no one has an answer maybe a mom or dad does.. who knows ..very frustrated..but would love to hears fromother with moya moya either with similar espisodes or just anyone... its hard to find an answer

I don't know of anyone personaly. Have you tried to call Dr stienbergs group to see if they could help out with her spells.
I will pray for you both,
Becky