Exactly which isn't right, you did the right thing and either due to negligence or laziness they weren't willing to do the leg work which would've resulted in a much better prognosis for you. There's certain things Dr's are brilliant at but when it's rare or unusual most seem to falter.

I did see a really good connective tissue specialist and they sent a letter to my Dr and based on my symptoms they are fairly adamant that the cause of my problems is pheochromocytoma. My GP has followed this up so now it's just another waiting game. Still can't comprehend how a neurologist can comment saying severe ongoing headaches and facial pain is normal if that's their mindset I'm glad they've released me anyway.