Well, I went to another neurologist for a second opinion. No one is really sure what in the heck is going on with me. I seriously need a Dr. House!! LOL But, he did figure out that what we thought was Trigeminal Neuralgia causing my facial pain was actually cluster headaches. I read up on it a bit, and it fits me to a tee. So we started a med for that, hopefully it will help prevent them, as it is a god awful horrible pain.
But, it got me thinking. Reading about them, it say they are caused by vascular dilation, but they don't know exactly what causes the dilation. I wonder if it is all related with the vasculitis aspect of behcet's.
I also have damage to my nervous system and we don't know why. So more MRIs to come, maybe a spinal tap. Of course, my guess is neuro-behcet's, I'm presenting like MS, but without any MS lesions. This would be a lot easier with a diagnosis of Behcet's already.
I am going to bring in a bunch of printouts from the BSS for my rheumy next appointment and hopefully he will actually get me a diagnosis, since we've ruled out everything else and I am pretty textbook for behcet's, including pathergy test. Otherwise I'm going to have to go on to rheumy number 3, whoever that may be!