I'm not saying you have to do it yourself, but you do have to put yourself in charge and not wait for others to act. YOU CANNOT DELEGATE RESPONSIBILITY FOR YOUR HEALTH.
You are so right!! I learned this lesson the hard way as I watched my husband being treated for multiple issues related to cancer; and, as I cared for my mother in her later stages of life. Even though I was fully aware that I needed to question, I needed to understand what the doctors were prescribing and why (in fact I was a PIA and the doctors told me so), sometimes you are so tired and so confused that you want someone else to BE IN CHARGE. From my personal experience, never, never let up your guard to the doctors or the nurses or the technicians. They make mistakes and those mistakes can cost one's life.
I keep copies of all my records - every test, every office visit. I want to know what the doctor is writing down in my file but probably has not told me. I have copies of all my MRI's - all the reports - everything!! My neuro says that I am the best advocate for my healthcare that he has as a patient - I take that as a compliment.
And, as I get ready for my trip to Stanford, I am not planning on being cured of MS - but, I do believe that if I have stenosis in the IJV or the VV, and that if I choose to be treated, I will have a better chance of no further progression than any other treatment that is on the horizon or is being used currently. I have done my research (thanks to the help of Marie, and Cheer, and others) - for me, this makes sense. Yes, I will have a ton of questions for Dr. Dake - I will be proactive.
Ken - I hope your post "stirs the pot" so to speak - I hope it gets people involved in their health. Great post!