When I joined the MPN community I became aware of something I call "Doctor Shopping."
In the simplest example people are "firing" their doctors because they don't like the way the doctor is treating them. Fair enough. Just because someone is a doctor doesn't mean they have a license to be a bully or a jerk. Sometimes patients feel like they have to twist the doctor's arm just to get test results. Sometimes it is apparent that the doctor thinks his patients are idiots. A friend of mine who asked intelligent questions had her doctor toss her paperwork at her and sneer, "Where did you get YOUR medical license?"
But there is another scenario that is not so reasonable. In this scenario a patient decides that he knows how to treat his rare disease, but his doctor disagrees. So the patient goes on a quest to find the doctor that agrees with him and will give him the treatment that he has chosen for himself. The patient may have good information or bad information. He may be taking cues from fellow patients on the internet who have had good success with one or another treatments.
I'm not sure that we would not be better off just randomly picking out a medication from the pharmacy shelves because we like the shape and color of the pills. They are taking the advice of "friends" they don't really know who are generalizing from their own medical condition and response to treatment to a person across the globe who they have not even met. We are supposed to take the advice of non-doctors who have not examined us over the advice of real doctors who have examined us.
I do know a lot more about myelofibrosis than most people in the country and I know more about myelofibrosis than many doctors. But that doesn't make me a doctor. I know some facts about myelofibrosis, but I do not understand the underlying chemistry, biology and genetics that are at work or how various treatments might effect a person. I do not dare pretend to be a doctor.
If you think you are getting inadequate medical care, by all means get a second or third opinion and switch to another doctor. Find a doctor you trust and trust that doctor to give you good advice. In my opinion a good doctor should be willing and able to explain what they are doing and why they are doing it. But don't decide beforehand what treatment you must have and find some doctor who will give it to you no matter what.
I have one caveat in this. Sometimes there are doctors who are mavericks who are swimming against the tide. One who comes to mind is Dr. Silver from Weill-Cornell. He has long been a proponent of using interferon in treatment of PV and ET (and maybe in very early MF.) Some people who have heard of the success of others have sought out Dr. Silver because they want interferon treatment. Well and good - because Dr. Silver is not just giving people whatever they want. He has done years of research and he carefully examines new patients and does all the necessary tests to see if he thinks interferon is appropriate for them.
Be careful. Find a good qualified doctor with experience in your particular disease. Make sure he or she is a good communicator. Ask good questions. Consider them your partner in pursuing better health.
In the simplest example people are "firing" their doctors because they don't like the way the doctor is treating them. Fair enough. Just because someone is a doctor doesn't mean they have a license to be a bully or a jerk. Sometimes patients feel like they have to twist the doctor's arm just to get test results. Sometimes it is apparent that the doctor thinks his patients are idiots. A friend of mine who asked intelligent questions had her doctor toss her paperwork at her and sneer, "Where did you get YOUR medical license?"
But there is another scenario that is not so reasonable. In this scenario a patient decides that he knows how to treat his rare disease, but his doctor disagrees. So the patient goes on a quest to find the doctor that agrees with him and will give him the treatment that he has chosen for himself. The patient may have good information or bad information. He may be taking cues from fellow patients on the internet who have had good success with one or another treatments.
I'm not sure that we would not be better off just randomly picking out a medication from the pharmacy shelves because we like the shape and color of the pills. They are taking the advice of "friends" they don't really know who are generalizing from their own medical condition and response to treatment to a person across the globe who they have not even met. We are supposed to take the advice of non-doctors who have not examined us over the advice of real doctors who have examined us.
I do know a lot more about myelofibrosis than most people in the country and I know more about myelofibrosis than many doctors. But that doesn't make me a doctor. I know some facts about myelofibrosis, but I do not understand the underlying chemistry, biology and genetics that are at work or how various treatments might effect a person. I do not dare pretend to be a doctor.
If you think you are getting inadequate medical care, by all means get a second or third opinion and switch to another doctor. Find a doctor you trust and trust that doctor to give you good advice. In my opinion a good doctor should be willing and able to explain what they are doing and why they are doing it. But don't decide beforehand what treatment you must have and find some doctor who will give it to you no matter what.
I have one caveat in this. Sometimes there are doctors who are mavericks who are swimming against the tide. One who comes to mind is Dr. Silver from Weill-Cornell. He has long been a proponent of using interferon in treatment of PV and ET (and maybe in very early MF.) Some people who have heard of the success of others have sought out Dr. Silver because they want interferon treatment. Well and good - because Dr. Silver is not just giving people whatever they want. He has done years of research and he carefully examines new patients and does all the necessary tests to see if he thinks interferon is appropriate for them.
Be careful. Find a good qualified doctor with experience in your particular disease. Make sure he or she is a good communicator. Ask good questions. Consider them your partner in pursuing better health.
