I find this rarely comes up. I go to all appointments with a written list of questions and issues that I give the to doctor. I make sure to get through all of the issues for any given appointment. I also make use of the patient portals to resolve many questions and issues. This saves time for both of us.
I have run into what I refer to as 15-Minute Doctors. These doctors run on a tight schedule and do not have time for their patients; therefore, I do not have time for them. To be fair, I do know when I need more time so I make a point to schedule a 30 minute appointment when I know I will need more time. I simply replace any doctor who is not able/willing to give me the time I need.
I do also make it a point to research issues related to MPNs and my other medical issues. I also attend patient and professional trainings and seminars. There are excellent seminars and webinars regarding MPNs. I have found that educated and assertive patients receive higher quality care.
I am very fortunate to have an excellent care team for the MPN and other issues I deal with. They are very responsive and willing to provide the time and information I need to manage my medical care. .I wish the same for all of my MPN kin as they seek to manage their care.
My MPN, Oncologist and regular doctor are all willing to answer all my questions. Two actually have worked together before and one will be calling the other about what I need for my symptom treatment. I am so lucky. I have a dream team! I would like to mention though, I went through 7 doctors in 10 years to get to where I am today. I guess the message is believe in yourself, never give up. You are worth it!
I have found that by having a rare illness we become experts in the field. We read and research every bit of information available. You have to use Jedi Mind tricks to make the doctor think its their idea.
Why medical doctors don’t provide the best meds with the highest effectiveness. Most recommended meds are the cheap routines that have high side effects and little chance of a cure. Study interferon!!!
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