How did you finally get a correct diagnosis?Kismet? Fate?
My ex was career military and I had the brilliant foresight to be a supportive wife and homemaker, allowing him to shine at work. This turned out to be critical to saving my life as his last 3 duty stations before we divorced were all special duty assignments, including his assignment to Travis Air Force Base as part of a tiny contingent of Army people stationed there.
Travis has a regional hospital serving military members from 8 states. It's longest hall is like a quarter mile long and it has its own dedicated gate on the base. It also is a teaching hospital that works closely with UC Davis Medical Center in Sacramento 45 minutes away and I think has connections to stuff in San Francisco, where some of our (family) testing occurred.
I had already been very sick for some weeks before we moved to Travis. Just before Christmas, we moved from temporary quarters into an apartment. January 4th, 10 weeks of chronic sinusitis turned to pneumonia and I ended up bedridden until some time in April.
I had about 2 doctors visits a week during that time and they ran all kinds of tests. All but two tests came back negative. I was told I have a ragweed allergy and a genetic disorder.
Because I was in the SF Bay Area, where by all rights an infantryman would not have been stationed normally, there were like 3 hospitals in the area that dealt with this disorder. My official diagnosis was atypical cystic fibrosis based on sweat chloride results in a historic grey area. Had I been anywhere else in the world, I probably would have died, having never received a proper diagnosis.
Most doctors have heard of CF. They have not heard of atypical CF, which presents more mildly and is frequently misdiagnosed as asthma, a diagnosis I had at one time. I felt it was wrong, but it got me useful treatment, so I didn't argue it at the time.
I also did some of the following things which I list in hopes of answering what I assume is your real question of "Do you have any insights into what I can do to try to successfully get a proper diagnosis?":
I persisted in the face of a lot of nonsense from medical people.
I tried to put my emotional baggage down before appointments and keep focused on getting answers rather than venting my spleen at random doctors.
At some point, I wrote everything down. Printing this out and taking it to a doctor was a mistake because he did not have time to read it. That appointment did not go well. But getting it all straight in my own head and able to tick off some of the most important details in chronological order and in a nutshell proved very valuable.
I eventually did some of my own research online as well.