When is it time to get a new doctor?

[Minneapolismark]

I obviously can't speak for him, but in the context of my two meetings with him this came up. At least for me in particular, he indicated that searching the web could lead me to draw erroneous conclusions. The best thing is to get decisive treatment.

He also indicated that I should try to focus on living my new life as the new me rather than obsessing about the nuances of the illness.

I can't say that this message was for everyone, but I've taken it to heart.

Now keep in mind that except for some lung scarring and a slightly collapsed left lung, I have gotten off very easily from Wegener's. My disease is well under control and most of my other problems were from two additional health issues that are now being addressed.

My doctors and I were somewhat blinded to the possibility that my symptoms indicated more than just Wegener's at work. It can become the bogey man.

Now please remember that the above is not straight from Dr. Speck's mouth. This is my take-away from my private meetings with him regarding my own particular case.

[Minneapolismark]

I did tell my doctor straight-up that I was going to the Mayo. I am quite certain he was happy to see me leave. I think it was very rewarding for him to diagnose an illness worthy of Dr. House, but I think it was very unpleasant for him to play an ongoing game of blind man's bluff with a confusing disease tha was not really in his speciaty.

fHe as much as told me so. So, you may be doing your doctor a favor by finding a more appropriate speciaist.

[chrisTIn@]

...you may be doing your doctor a favor by finding a more appropriate speciaist.

I totally agree. In the year prior to my diagnose my GP looked somewhat desperate and insecure from time to time. I think it was a relieve for him when I got a specialist that finally was able to put it all together and make the right conclusion.
For me it was, anyway.
I was getting tired of myself, so to speak.

[JanW]

I think that whether or not your doctor wants you go on the internet probably has as much to do with your personality as with his/hers. For instance, in Sangye's case if you have a fearful/anxious patient, especially one who may look for things that are not there (such as is the case with many parents and pediatrics), yes, the last thing you want them to do is to think that runny nose on their kid is WG. However, for the patient already diagnosed with a chronic, potentially life threatening disease, I think that you want them to be able to use the internet so that they can be more informed as you speak to them. Which is not to say if they are not already familiar with the terms the doc looks down on you, but it was helpful in my case to already know what subglottic stenosis was, what the various treatments were, etc., before I walked in.

[Sangye]

I had a great GP in Arizona but she knew Wegs was extremely complicated. She said she wouldn't treat me unless I was under the care of a Mayo doc. (We didn't realize my Mayo AZ doc wasn't a Wegs specialist) That's how it should be. A GP should have the solid support of a Wegs doc and should never be left to sort out what's Wegs and what's not.