@carlie8326
Hi Carlie,
Glad they don't think it's moyamoya, but it must be so hard to not know what's causing symptoms. 🙁
I hope this doesn't sound too intrusive but I'm wondering--Did they do an MRI/MRA? About a year before I was correctly diagnosed, a neurologist that I no longer see diagnosed me with possible MS, which I do not have. The correct diagnosis could not be determined until I had an MRI and consulted an expert. My sister, who is a nurse and worked in radiology at the time, had to stress the importance of the MRI to my primary care doctor at that time, who wasn't sure it was necessary...I've also heard from other people diagnosed with moyamoya that they did not get a correct diagnosis for a long time and after many medical appointments.
I hope you find answers!
Best wishes,
Valerie.