If you don't mind me asking, what are your main symptoms? My symptoms are never quite the same from day to day, which I guess most people go through that. My biggest problems are usually between 12 and 2am. I wake up with the surges that I've read other people have. Extreme pain in the chest that lasts up to a day and a half(my blood pressure and heart rate are normal part of the time during this pain.) Somedays my blood pressure is fine with a heart rate the gets around 113 after about 20 minutes.I haven't caught my rate at its worst, but I think the highest I've recorded was 135 and I'm sure it's been much higher. So, a lot of these I know are pots symptoms. My blood pressure monitor picks up irregular heartbeats quite often and it feels like my heart does a lot of afib stuff. When I lay down, sometimes my blood pressure gets extremely low. I have swollen lymph glands, bleeding gums, weird rashes that keep popping up. Also weird nerve pains, like through my arm, up through the side of my neck to the top of my head down through my eye or cheek which sometimes causes a little twitching. When I've had severe episodes, I have had the tremors as well. I suspect that I have celiac disease because I had blood work done through an alternative doc that showed sensitivities to wheat, gluten, dairy, etc. I sometimes get tingling through my tongue. I have some hypermobility in my finger joints. After taking a shower, the blood vessels will burst in my eye and the list could go on and on. I guess my biggest concern is if I need to get my norephinephrine levels checked, my joint hypermobility, some kind of neuro thing , and the rash, bleeding gums, etc. Sorry, I feel like I'm rambling on. I really wish the best for your appointment, hopefully this will be a step in the direction of seeing Dr. Grubb!