“If there is something that I really want to express to my doctor I always keep a journal, but add to it printouts of my research. Last fall, I was interested in adding a non FDA medication called Low Dose Naltrexone, LDN for short. I did my research, even found some research that my own doctor had participated in. I went to my appointment fully prepared and left with my prescription and I believe a little more respect from my doctor.”
“My PC she is a good doctor but when I was having an issue with my feet swelling really bad I figured it out before she did. And she never got back to me. I know that is only one thing but sometimes I feel like she has too many things on her plate. Then all of a sudden I have an issue and she calls me right back with the answer. But I need to realize that she doesn’t deal with MS patients all the time.”
“I have no issues talking to any of my doctors and I would change MDs if I did. I have had issues with falling through the cracks of the healthcare system, but that’s hard to pin on one person or one office. I just keep calling or emailing until what was supposed to happen, happens. Sometimes I get a number or ask for the next step so I know who to call (or email) if/when the ball does get dropped. Or so that I can just know what’s next.”
“I have to say, the hardest part was getting them ALL on the same page as I was! I have 3 doctors: Neurologist, PCP, and my shrink. They all have their own specialties, so I keep them there! When I go see my neurologist, I write my 3 BIG questions down 1st! And write down my answers! So I have to look back on! I also find that if I can make him laugh, he will be more open with me! And not so doctor-ish!”
“I write down my main questions in Notes on my phone and type the answers on my phone as I’m talking to my doctor. I let the doctor know that I’m taking notes on my phone, not texting. The benefit is I can look back at my notes during my next appointment. I just keep adding to the notes with each appointment.”
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