KellyA

I liked him. But I don't think her has much understanding of my underlying AI diseases, because it's so rare. I'm just hoping he can give me answers. He seems really smart, and is soft-spoken. He doesn't have a nurse or MA, which threw me. He did everything. I'm waiting a week or so more, but if I feel like he's still dismissing my symptoms and NE levels, I think I might see if I can get in at UW. I've always wanted to go to Alaska, but I've heard healthcare is tough to manage there. Question for you...do your hands shake? He thinks I have tremors, but I think it might be from the high NE levels.

Curious how your appointment went? Hope you're liking Washington

Thanks! I'm thinking I need a second opinion, although he said he was doing some research. Especially on my relapsing polychondritis which he's only seen once for migraines. I went to Dr Erik Armitano in Kirkland. Most of my other Seattle drs are at Virginia Mason. Where in Wa did you move, and where from?

Hi, I was also wondering who you see in Seattle for your hyperpots. I'm in eastern WA and have a neurologist in Kirkland that I found on the Dysautonomia International site. He's great, but I'm questioning his understanding of hyperpots. My norepinephrine levels are 600 lying down, and 1150 standing. BP and HR both jumped on standing in the past. I had autonomic testing yesterday, because of my BP/HR logs, and he was surprised that everything was normal except the Valsalva Maneuver. It was decreased. He thinks I definitely  something going on with my vagus nerve, but doesn't think I have POTS now. I have horrible GI issues, cold/clammy hands and feet, tremors, flushing, etc. I also have lupus and relapsing polychondritis. I think I have hyperpots and mcas. I'm wondering if my meds compensated because I wasn't off them long enough. He's insistent that the norepinephrine values are not abnormal, even though they're both high. He says it's the level of increase that's important. They doubled on standing, which he says is normal. From what I read, only pheo tumors have a higher percentage increase. Anyway, I'm a big believer in not sticking with a Dr I don't totally trust. I already come to Seattle, Virginia Mason, for my rheumatologist, so would love any recommendations you might have for someone more familiar with hyperpots and a second (or third, rather, after the local idiot I saw first!). Thanks!