Debi
Thanks, I am so glad you have a good PCP,
And I wish you the best. Hope you are fine. You need the strenght for the baby

I hardly see my PCP. I mostly let my rheumo have control of my care. I get IVIG Rx. in his office. I see him every 3 months. I also see my neuro off and on. I think he believes it is Sjogrens and there is nothing else he can do. He suggested I go to the NIH. He sent all my paperwork. I am waiting to hear back. There is nothing else he can do for me.

I have seen many doctors and I feel everything become more confused with each one. They seem to all have different opinions! For now I am sticking with my rheumo.

I don't disagree with anything said thus far, and wish you the best in finding the right PCP for you. I found a good one by careful vetting, and it took several years to assemble a good team—and they still don't talk to each other.

The question of medical diagnosis is very complex, and worth reading/understanding. Boiled down and oversimplified, it's an educated guess, but that is very oversimplified. Given that 3 specialists may come up with 3 diagnoses, it pretty much has to lie with the patient to accept one or more, become the expert in their own condition(s), and take responsibility—drawing an analogy from baseball—as General Manager, while hiring a PCP as Manager of his/her team of specialists, etc.

Doc

For my understanding, is a PCP what would be called a GP in the UK, or the "home doc/family doc" over here?

My GP is certainly not an expert on PN, but I have a very very good rapport with her, which I find incredibly important. She listens and reacts to my suggestions. She tries/tried to send me to the best specialists she knows. She does trust that I'm not suffering from "internetitis" and reads up on what I suggest herself.

She also stated that for her (and her colleagues in the practice) rheumatologists seem the most often inclined to try different avenues of thinking, like you seem to have experienced also.

I think I'm saying that I am "in charge", with my GP as a sparring partner and consultant. That felt mighty uncomfortable at first, but I got used to it.

One thing I also do is to put all my blood test markers (the ones that are important for PN) in a single spreadsheet. It helps understanding their evolution (if any) and sometimes I find "anomalies" that aren't apparent when you concentrate on one single result, but come through when you note/see them in historical context.

Almost every time when I read how patients are treated I get angry in their place. So I know it's probably even worse having to read "well, you should take charge yourself". We are not trained for doing so! But it does seem that the more information you can gather yourself (to finally find that okapi indeed), and the more you can keep the overview, the better it is in the long term.