Bill,
Yes. I am going to an 'approved' CF Center and I am being treated by a CF Pulmonary Specialist. However, that doesn't mean they know everything or are experts in all things, they are human after all. They tend to be very good as long as everything is a common CF issue with text book presentation and treatment. As soon as we get outside of that, then it starts to fall apart.
Also, I've asked the doctor for current material, and so far he hasn't really had anything to give me. But even if he did, I'm not going to stop there. For me, that would be like going to buy a new car and trusting the car dealer to provide you all the info you need about cars. I'm not about to blindly put my life in someone elses hands. Just because someone has MD after their name doesn't mean they always get it right. In fact, medical information is evolving all the time, so even the best doctors are always behind.
For example, a few years ago I was diagnosed as pre-diabetic. The nutritionist at the CF Center asked me to replace the sugar in my diet with alternatives as much as possible. I did this. Within a month or so I started experiencing neurological symptoms. I was moving around in a haze. The world felt kind of funny, and I would have a hard time remembering what I was doing, I couldn't concentrate, and sometimes did weird things like put my cell phone in the freezer. It was like I was high, drunk, or senile.
When I talked to the CF Center about it, they went through several different things, but ultimately said they didn't know and said it wasn't a CF problem. I started doing my own problem solving, and when I talked to a diabetic who had previously had similar symptoms that had been caused by a reaction to aspertame, I was able to focus my research on the affects of artificial sweetners. I found a lot of information - some reliable and some not, but its all about knowing how to tell the difference.
In my case, it turned out that I don't have a problem with aspertame, but I do have a reaction to sucralose - which isn't all that uncommon. I removed sucralose from my diet, my symptoms went away, and I was able to educate the nutritionalist about these issues. Hopefully the next time they have a patient who has these symptoms, which isn't out of the realm of possibility, they can help them rather than throw up their hands and say 'not my problem'.
That is not the only time I've had doctors make mistakes or force me to be my own doctor. While not CF Center related, my grand father was diagnosed with dementia and suffered from it for almost ten years, until my uncle did his own research and found out about hydrocephalus and saw that it fit my grand fathers symptoms better. He ultimately had to take my grand father to a different doctor who would listen to him before they got my grandfather properly treated - by then he'd had hydrocephalus for so long that permanent damage had been done, but at least he gained some level of himself back. He had been misdiangosed for a decade and it took a non doctor, doing research on the internet, to get the correct diagnosis.
To me, my doctor is an expert advisor who I consult about making health decisions, but I must decide whether or not to trust his advice or if I need to go to someone else who might know better. Educating myself as much as I can, including going beyond the scope of information he might provide me, is the only way to do that.
Autumn -
Unfortunately, my insurance does require a referral to see a specialist. Right now I'm simply collecting info and educating myself, so that I am better prepared when I see my doctor next week. Depending on how I feel about the situation after that, I may try to get my GP to give me a referral to a different doctor ... either an infectious disease specialist or a different CF Center.
