Quote:
Originally Posted by AnnieB3
I'm sorry, Alice, I don't mean to be contrary - just being honest. To me, being a highly educated patient, it is not a chicken-egg issue. There are neurologists out there who are cruel. And I mean denying a patient testing cruel. Denying clinical results cruel. And in cases like that of Rach (sorry, but you're an easy case these days, Rach), they have been completely immoral. Her oxygen stats go so low but they accused her of holding her breath for an oximetry test.
And I've seen doctors say a patient is too educated and should leave the doctoring up to them and then say they aren't educated enough. Blaming patients for their lack of, or too much, education is dangerous. It is the JOB of the doctor to get it right. And to be nice about it all. My auto mechanic doesn't expect me to diagnose what's wrong with my car. I know, not the same thing. But it's not my JOB to be a doctor, nor do I want it to be my job!!! 
Doctors do indeed have most, sometimes all, of the power in the patient-doctor relationship. If they decide to have a negative view of their patients, even if it isn't true, the patient is screwed. I've seen it happen over and over again.
So while we as patients have some say in our care, it is ultimately the doctor who "decides" what is going to be done. We can't order tests or write prescriptions, only they do. And once a prejudice is in place that effects the view of a doctor, good luck getting them to change it or admit they were wrong.
I've seen too much doctoring in the past few decades to ever put on rose-colored glasses again. Having said that, I have also had doctors who I've known for decades who are amazing. It's not the good doctors we need to be wary of or to warn patients about.
I'm not putting you personally down by saying this about your profession! Only those particular doctors who don't do right by their patients.
The bottom line here is that YOU need the best care you can and I'm glad you are getting it.
Annie |
Annie,
maybe you are right and each of us has to take care of him/her self, and just accept that this is the way it is with this illness, but I still want to believe (and you may think that I am naive), that this can be changed, so that other patients will not have to go through this ordeal.
you are right, I am now recieiving excellent care, but in order to get there I had to fight for four years, and still there are days, when I call my pulmonologist and recieve very reasonable, practical and helpful advice, and I am truly surprised. or when my neurologist says- I have never seen something like that, but not out of disbelief, but as a fact, that I ask myself when is he going to say that this is "impossible".
I do not think that any thing that happened to me was out of cruelty. I think it was a combination of lack of knowledge, missconceptions, over reliance on
diagnostic tests, laziness of thought, fragmenatation, arrogance, etc.
I can tell you, for example, that pulmonologist that do not have a good understanding of neuromuscular disorders, and infer from what they know about asthma and COPD (which are obviously much more common) can make serious judgement and managment errors. and also a lot of them have very little true understanding of non-invasive ventilation, and this is something I have learned the hard way.
alice.