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.

Pretty much, yes.

There are many (too many, IMO) things we are not trained for that we (probably?) should be. One of the problems with living in an advanced/technical age is that there is so much more to learn/know than there was 500/200/100, even 50 years ago, and not only will it continue to increase—the rate is accelerating.

On top of that, there is a worldwide shortage of doctors in every area of medicine. Change can be hard; I know it is for me—always has been. Hard to accept my body & mind aren't what they were (supposed to be) and hard to learn all the stuff I have to learn, when there isn't enough time to learn all the new stuff I want to/would rather learn.

Doc

That is a very good point. As much as it felt being thrown in into the deep end, I did manage to get on top of the disease (and the other factors that contribute to "health)".

We used to trust blindly in the medical profession. Now we seem to have to do our own homework. Or perhaps that was always the case?

I'm not complaining - there is even a part of me that appreciates the science - but as you say, there are 24 hours in a day. I'd rather have time to study music theory etc. But we now have resources (like this forum, books can be ordered and be available in the blink of an eye...)

Maybe kids should be prepared for this in school? How to take charge of your health?

Anyway, it seems we all pretty much agree that a PCP you trust, combined with actively researching yourself, is probably the best way forward. Specialists can be found and are obviously still very important, but if you don't live in an area where there are top people (like NY), you might be out of luck in that regard.

Some books have been around, but finding what was available took a modicum of library science knowledge (to know to look in Books in Print or its equivalent in other countries) or gain access to decent medical libraries. Doing our own homework wasn't nearly as practical (let alone possible) for most people.

Like other advancements, the numbers of books & periodicals have increased algebraically in the past 50 years, but the internet has put everything imaginable (and a few things unimaginable) at out fingertips. Now we have direct access to doctors, medical research, and more that we never had just 20 years ago, and its only going to keep growing.

Doc

There is another great way to do research. If you are near a teaching hospital, You can get access to the medical library used for students. I read the magazines like JAMA. You look up the condition, and it tells you the lastest articles written on the subject that has been published, but not yet in Books.
These articles are the most recent on medical conditions. There are many journals like JAMA. ginnie