I've certainly had this issue arise. With a particular GP, who was 65% reasonable, I was able to employ on several occasions a combination of give and take. For instance, I knew I needed a tilt table test to diagnose OI or POTS. He thought that was silly. It is an expensive test and I was fatigued and probably a tad depressed with a soupçon of hysteria.
But I brought him the carefully done and presented results of five poor man's tilt table tests. He began to consider it, but maintained--as he always had-- that perhaps I didn't have ME at all but a cardiac problem that was making me tired. I knew this wasn't the case, but in the end we agreed that I would dutifully see a cardiologist and let him do all the standard testing and if that showed nothing pathological, we could move on to the TTT. In fact, that is exactly what happened and the TTT was definitive.
My best advice is to keep looking for doctors who are willing to do tests. I never would have broken out of the "CFS" diagnosis if I didn't pursue further testing.
On another occasion I asked for an upright MRI of the cervical spine. He just said no---I can't read it, I don't know how I'd use it and I won't order it. So then I had to go to the Center for Complex Diseases where Dr. Curtin ordered the 3T supine MRI favored by Bolognese in the first half hour of my visit.
It is very discouraging,
@dyllanmurphy, particularly when you know you have more information than the gatekeeper who is standing guard over the tests that might really be game changers. Personally, I have changed GPs more than I would have thought. I don't want to--not at all--but I am not going to keep seeing and paying someone who doesn't respect me.
it's hard to find a doctor who will play ball.
I hope I have gotten better at winnowing out the self-satisfied jerks, asking better questions at the outset and then moving on quickly if the person treats me like I am a problem. I basically ask them if they are willing to play ball: I tell them I don't expect them to be an expert, but ask if they will work with me to look at and investigate various testing and treatment based on what I bring them. I just started with a new doc and I told her about the emerging Abilify prospect and asked her directly: would you consider prescribing that to me if I find enough evidence to feel comfortable asking you to do so?
And then as judiciously as possible I seek out specialists who seem like they have something in particular to offer me and my catalog of symptoms. Not everyone can do that, I know, so finding someone who is willing to work with you and learn with you is a big deal. And like a needle in a haystack. But what else can we do but look?
