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@ajg

Hello John,
Thank you so much for your kind and understanding response. I will definitely be following that link, for helpful tools, I'm very open-minded when it comes to learning how to communicate with Doctors, or at least I like to think so (HA). In answer to your question, I generally have this plan , loosely formed in my head, but I have been very prepared, or thought I was in the past, copious notes, index cards, practicing with a trusted and knowledgeable friend, and sometimes, they still don't have the answers for you, so I think, it need to be mindful of the fact that, not helping me is not the same as not wanting to help me, sometimes, they really don't know, That's hard to take, when your feeling desperate, and afraid. That said, it's probably a good idea, to always be prepared, whatever the expected response, just so that I'm clear, and don't get sidelined by emotions, which is expected when your in that situation; white coat, intimidated, fearful, etc. I feel like I have heard stories, experiences, from others, having gone to several Doctors, before they finally find someone who can help them. The process is very difficult, but I think it's important to understand the basics, of communication, Doctor to patient, and I recently read an article, in regards to "not trying to be the doctor", but also speaking up for yourself. I tend to be forceful, when I'm scared, which they sometimes misinterpret, as "telling them what to do",….so perhaps it's a balance. Thank you as well for your encouraging words, of support, in regards to me feeling like I know what I know, and trying to not be discouraged, if myself and a doctor, are not seeing eye to eye. I suppose that's to be expected, especially so when a situation is complicated. My mother was a nurse, so I was trained to be attuned to my body, and how it works. It can be a help, and also a hindrance, when I go too far, and try to reach for more than I'm able to understand something in it's entirety. It's very difficult to stop "trying to figure it out, on my own", when you haven't been listened to. You literally feel, alone, in your issues, and finding solutions, based on a limited amount of information. So, naturally you could draw the wrong conclusions, based on incorrect information, speculation, and fear. It's hard. I am really really glad, you responded in a way, that makes me feel validated. Thank you.

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@ajg – I hope your upcoming appointment goes well and you are able to give us an update on how it went. You might find the following YouTube video interesting. I had the opportunity to hear Dr Montori at a Mayo Clinic talk a few years ago.

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