How to talk to my doctor & share research/knowledge I have found?

I'm sorry for your experience and relate to bursting into tears in the doctor's office out of frustration. I've done that in more than one setting & have found most health professionals are compassionate and understand. But I know how that feels to react in tears when I wish I was more articulate, as I had been before my diagnosis. Keep your research going, I am, since I have nothing to lose and potentially something to gain.

My story represents a couple reasons why I think it happens, for me. My story is fairly simple and 90% of yours. I've had epilepsy for 40 years and had 7 neurologists, 2 of for more than 5 years. The last 32 years I have lived in the same town, population average 400k, which may only have 8-10 neurologists. How many good in that 8-10? Neurologists practicing with epilepsy focus only are hard to find. Oddly 50% are over 50 years but that doesn't mean they have collected 50 years of epilepsy practice focused, with their gathering of new epilepsy information, lets say over 20 years. During the first 25 years I read enough to find what you said very true with the last 15 even more on my own for new info (note: there just hasn't been much of). The young bucks were better but not much. I have ended up using the neurologists (please no jaws dropping until you get there) not for diagnosis because that is accurate, but for management of my medication. 60 years ago maybe 3 medications were available for treatment. There has been a boom of new med use treatment during the last 25, now approx 15-20 meds, and it's been a giant improvement. I stay with my neurologist to keep the most effective meds I have used to date. I have used approx 10. I and most neurologists would consider an epilepsy patient well managed at 90% seizure controlled. My neurologist would prefer to try those new meds or combinations of to manage 100%. Intent well taken but, that won't be reached, in well over 50% of epilepsy patients. He may have good/better information than I, and "maybe" more client history,,, read about,,, the best he can do. We wouldn't compete but he may be impatient because he did actually know more and be frustrated having to explain. I should then say, with pen in hand, where did you get your info and where can I get new and more too. Which may make him feel on trial but,,, you have to ask because you are purchasing his services, which is another whole field of views.

Reason 1,,, Not all neurologists are up to date on the 20 new meds. #2,,, There aren't enough epilepsy patients in a town of 500k to make a profitable business, if you focus your practice on epilepsy only. Understood most medical practices are a business and there isn't time for it. Unless a specific walks into their office there isn't a reason for them to focus on your questions. #3,,, I certainly am not of mental caliber to practice 5% of neurology but, like yourself I can collect plenty of history effectively, processing well enough to present "variations of new practice history", elsewhere in the world. #4,,, A lot of human character in a diner with friends may act the same way if you present new tire information to someone who owns a tire store. Neurologists and you doctor too are human behaviors in or out of a practice, and not necessarily 1%ers, so we will have handle questions with kid gloves if he's all you have.

Why don't Dr.s do blood testing for vitamin and drug interactions?? Mine doesn't even do referals. If I find a specialist, they have to get a referal from my provider DR. !?!?!

My story represents a couple reasons why I think it happens, for me. My story is fairly simple and 90% of yours. I've had epilepsy for 40 years and had 7 neurologists, 2 of for more than 5 years. The last 32 years I have lived in the same town, population average 400k, which may only have 8-10 neurologists. How many good in that 8-10? Neurologists practicing with epilepsy focus only are hard to find. Oddly 50% are over 50 years but that doesn't mean they have collected 50 years of epilepsy practice focused, with their gathering of new epilepsy information, lets say over 20 years. During the first 25 years I read enough to find what you said very true with the last 15 even more on my own for new info (note: there just hasn't been much of). The young bucks were better but not much. I have ended up using the neurologists (please no jaws dropping until you get there) not for diagnosis because that is accurate, but for management of my medication. 60 years ago maybe 3 medications were available for treatment. There has been a boom of new med use treatment during the last 25, now approx 15-20 meds, and it's been a giant improvement. I stay with my neurologist to keep the most effective meds I have used to date. I have used approx 10. I and most neurologists would consider an epilepsy patient well managed at 90% seizure controlled. My neurologist would prefer to try those new meds or combinations of to manage 100%. Intent well taken but, that won't be reached, in well over 50% of epilepsy patients. He may have good/better information than I, and "maybe" more client history,,, read about,,, the best he can do. We wouldn't compete but he may be impatient because he did actually know more and be frustrated having to explain. I should then say, with pen in hand, where did you get your info and where can I get new and more too. Which may make him feel on trial but,,, you have to ask because you are purchasing his services, which is another whole field of views.

Reason 1,,, Not all neurologists are up to date on the 20 new meds. #2,,, There aren't enough epilepsy patients in a town of 500k to make a profitable business, if you focus your practice on epilepsy only. Understood most medical practices are a business and there isn't time for it. Unless a specific walks into their office there isn't a reason for them to focus on your questions. #3,,, I certainly am not of mental caliber to practice 5% of neurology but, like yourself I can collect plenty of history effectively, processing well enough to present "variations of new practice history", elsewhere in the world. #4,,, A lot of human character in a diner with friends may act the same way if you present new tire information to someone who owns a tire store. Neurologists and you doctor too are human behaviors in or out of a practice, and not necessarily 1%ers, so we will have handle questions with kid gloves if he's all you have.