Reflecting On My Diagnosis
I regularly iMessage with Kat and Dia, often about topic ideas for Asthma.Net writing—some recent posts borne of these discussions include ones on “‘medicinal' Doritos” and Kat writing an atopy Q&A post based on the 34 questions I asked her one night in early December (not a real number, but I did ask her a lot of questions related to my sinus congestion that may or may not be allergic). These brainstorming sessions also often include them reminding me of the monthly themes the Health-Union team gives us to spark inspiration. January’s spotlight theme is diagnosis, and my response to that was “Oh that was a s*** show. I could do a whole series on that."
Then I somewhat jokingly sent this list of topics I could cover relating to diagnosis. I didn’t realize it at the time, but it turns out to contain mostly posts I have already written here:
- Misdiagnosis (x2.5)
- “Mild asthma”
- “Moderate asthma"
- Meth[acholine] challenge and other diagnostics
- Ruling out sinus issues and VCD
- “Moderate-to-severe asthma”
New diagnosis methods
While this chronology might imply as such, my overall asthma severity has not changed, rather, it simply has become more accurately characterized as I have seen different doctors who are more invested and skilled in asthma management and research, and as the research has unfolded over the almost-decade that I’ve had asthma—back when I was diagnosed, which was hardly the dark ages in 2008, the literature tended to classify asthma solely on FEV1. To an extent, it still does, though I think a greater proportion of doctors use frequency/severity of symptoms and meds required to control asthma to gauge severity, and when appropriate, FEV1, since these things do not always match. In this regard, the subject of severe asthma, specifically, has had some interesting developments and recharacterizations in the near-decade since my diagnosis. Still, the problem remains that there are few widely-accepted definitions and diagnostic criteria used to characterize asthma—and, on top of that, proper testing is not widely enough done to ensure an accurate diagnosis is made. This was also my experience, as it was at least a year following my diagnosis—and after starting treatment—that I did have spirometry done (one doctor who *seemed* thorough was going to send me, and then I called his office and they could find nothing about my referral for PFTs. By then I was waiting to see a different family doctor!)
Many “players” involved in diagnosis
Over the years, there have been many players involved in my initial diagnosis and confirmation of diagnosis of asthma, and making sure we’ve gotten it right. This includes two walk-in clinic doctors (one who got it wrong, and one who got it half wrong), two family doctors (my current one, and the guy I saw once or twice who didn’t send the PFT referral), two respirologists (Dr. Smartypants who is a research doctor, and a guy who was more interested—I presume—in COPD than asthma), an allergist, an ENT (ear nose and throat specialist), a few respiratory therapists, including a dude named Leon who did my methacholine challenge and the asthma educator I saw once who said I didn’t need to be there. Even though I did not see some of these people until years after my initial diagnosis, I am a firm believer that you need to know exactly what you are treating—and each of these people helped to confirm or reconfirm my asthma diagnosis, or assessment for things that could be related to my asthma or asthma control, such as the allergist—who was imperative in helping me get my mostly non-allergic asthma under control--and the ENT who ruled out sinus issues as a complicating factor
Who was involved in making sure your asthma was diagnosed correctly?
Have you experienced a collapsed lung?