Reflecting On My Diagnosis.

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:

  1. Misdiagnosis (x2.5)
  2. “Mild asthma”
  3. “Moderate asthma”
  4. Meth[acholine] challenge and other diagnostics
  5. Ruling out sinus issues and VCD
  6. “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?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Asthma.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (4)
  • musicnutt
    8 months ago

    I was 5 years old when I had my first bout with asthma I was NOT diagnosed with asthma at that time at least not until I was in the emergency room

  • Leon Lebowitz, RRT moderator
    8 months ago

    Hi again musicnutt. Sometimes that’s the way it goes – no true diagnosis until you land in the emergency department. It sounds like you’ve had asthma all your life and continue to manage it today. Warm regards, Leon (site moderator)

  • Dia SWS
    11 months ago

    My diagnosis has involved the following :
    1 x Community Respirologist
    1x Research Respirologist who was limited by the fact that he was advocating for a sputum lab and still doe snot have one… Although he is connected top a leading University, the hospital still provided a barrier to providing all the fancy things required for pheno and Endotyping.
    4 x World renowned asthma researchers
    1 x awesome allergist, who was the only person who was helpful for a period.
    2 x super dupery ENT’s ( who are treating comorbidities from asthma treatment).
    1 x Family Doctor who ended up becoming a great supporter and advocate.
    1 x Research Asthma Nurse.
    3 x Superb RT’s and research coordinators. Yay !
    1 x Fabulous lab full of technologist, scientists, PhD students, post grads and fellows!

  • Kerri MacKay moderator author
    11 months ago

    How is it that even in primarily non-allergic asthma, sometimes the allergists are the only helpful people for a span of time! Crazy!

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