Well, my neurologist diagnosed me yesterday, and I am only mildly freaked. She referred me to a neurosurgeon here in my city, but I am almost certain he has little to no experience with this disease. My diagnosis was from a CT scan. I fully expect an angiogram for the final confirmation. Should I have this test done locally by the otherwise "awesome" neurosurgeon? Should I wait until I choose an experienced surgeon/team and let them do it along with anything else they may want?

Thanks!

What city are you in?

I would recommend having the angiogram done locally.  It was our experience that when we sent the tests to be looked at by the specialists, that they needed the angiogram to give their opinion.

I am happy to hear that you are handling the diagnosis so well!  If you don't mind my asking, what symptoms were you having that led to a diagnosis?

I am in Jackson, MS. For years I have had vague paresthesias, especially on my left side. Balance problems too. My Family Med. doctor got an MRI that suggested MS. The neurologist (not my current one) diagnosed Complex Migraines. I still may have that for all I know. However, over the past 10 years, my blood pressure has been harder to control. Every now and then, upon standing, my left arm would go numb and have a weak grip. In January, when I got very aggressive with my BP meds and eating healthy, it became more consistent, including jerking and twitching.  Finally noticed these episodes happened when my BP was normal, but disappeared when it rose to my elevated baseline. Finally figured out it was a cirulation problem to my brain! New neurologist and new tests. Now a new diagnosis. I am to keep hydrated, avoid diuretics, and keep my BP on the high side.

I have been blessed not to have a full-on stroke. But I would like to get this treated as soon as possible. How long does it take to get appointments for this? Is there a long wait time? We are looking at the Mayo Clinic or Stanford right now. But wouldn't mind something closer to Mississippi either.

BTW, my MRI still suggests MS or complex migraine. Can moyamoya disease cause similar results?