Hi everyone,

I've been wondering for a while whether I should seek testing for Moyamoya, and I would love some feedback or insight if possible.

I am a 29-year-old, half-Japanese woman, and I have been having frequent headaches/migraines for about ten years. For a long time I wrote them off as just an annoyance, but a year ago I went to a neurologist because I had started having issues with balance and coordination in addition to the headaches. My neurologist told me that I was having vestibular migraines and prescribed Amitriptyline, which has thankfully helped with my balance. However, I am still having pretty frequent headaches and they are pretty debilitating. My neurologist didn't run any tests so once my balance got better it was pretty much "case closed" for her.

What has me worrying, though, is the stroke history on the Japanese side of my family. My father just passed away at 64 from his fourth major stroke, and he had had just as many TIAs in between. He had an artery near his brain stem that was almost completely blocked. My grandfather died of a stroke, my grandma had one recently, and my aunt had one about ten years ago. Before my dad had his final stroke, my mom, who is a nurse, suggested that he get tested for Moyamoya. Being that she was his ex-wife, he didn't take her suggestion very seriously and never asked his doctors about it, so now it's not possible to know the answer.

With all of this information in mind, should I be more firm with my doctors about wanting to have testing done? I have been passive where medical care is concerned, because I felt like I was being a hypochondriac. I just changed insurances, though, and I have an opportunity for a fresh start.

Sorry that this is so long, thank you for reading, and thanks in advance for any feedback you may have.

I think you should definitely push for testing that would show signs of Moyamoya. I believe it’s just an MRI but you could always verify that with the Moyamoya team at Stanford. They will review any MRI results you send them for signs of Moyamoya. I have learned too many times over the years that you have to remember your doctors work for you, and sometimes you need to take charge of your own health. You know your own body better than anyone and you should listen to it. If your doctor doesn’t want to do it, then fire them and find another that will.