OpenHealth Q&A

Concerns About Potential Misdiagnosis

Hello everyone, I recently stumbled upon this subreddit and felt it would be the ideal platform to share my experience. I initially posted something similar under r/Asthma but soon realized that this community might be more appropriate for my concerns. To provide some context, I’m a 25-year-old woman with no personal history of smoking, although I have been heavily exposed to secondhand smoke throughout my life. There is a family history of asthma and COPD on my side. I was diagnosed with asthma during childhood but seemed to outgrow it as I got older. Throughout my younger years, I frequently battled respiratory and sinus infections, and in my teenage years, I suffered a severe case of walking pneumonia. Following that episode, my breathing worsened significantly, prompting my doctor to reinstate the asthma diagnosis and prescribe albuterol inhalers without performing any additional tests except for an X-ray to confirm the pneumonia had resolved. Over the years, I’ve noticed a gradual worsening of my symptoms. Each primary care physician I've consulted has prescribed various inhalers and medications, but the relief they provide has been minimal. For years, I have dealt with a persistent dry cough described as that of a seasoned smoker, yet my doctors continuously assured me it was merely asthma, claiming that my inhalers would alleviate it. When a coughing fit does occur, it can be so intense that I end up gagging, losing control of my bladder, and feeling dizzy. Fast forward to two weeks ago: my cough intensifies with physical activity, and I have a physically demanding job. Typically, my inhaler assists me with breathing, but in this instance, it was ineffective, and emergency services were called to administer oxygen. My oxygen saturation dropped to 93% until the oxygen and my rescue inhaler were applied. I declined hospitalization after feeling better with the oxygen. I took a day off work to recuperate. I managed to see my primary care doctor afterward. Having been on Advair and albuterol for years, I was also prescribed Singulair last year due to flare-ups. In my recent visit, my doctor substituted my Ventolin (albuterol) with Airsupra and introduced Spiriva, along with short courses of Mucinex and Prednisone. At the appointment, my lungs sounded clear, and my oxygen levels were between 99-100%. There was no wheezing, just persistent coughing. Returning to work the following Thursday proved challenging; within three hours, I experienced another severe coughing episode that felt as if my throat might rupture. I was gagging, tearing up, and struggling to remain upright, feeling dizzy and breathless. Several doses of my rescue inhaler provided little relief, and emergency services were contacted again; I was subsequently transported to the emergency room. My oxygen saturation was stable at 97-100%, yet I continued to feel breathless and my painful coughing persisted. Respiratory treatments seemed to exacerbate the coughing, and magnesium failed to provide relief. Both the paramedics and ER staff expressed concern when I mentioned my chronic cough that had persisted for years without improvement. Initially, emergency responders detected only a faint wheeze and diminished lung sounds on one side, although they later reported normal findings. No fluid or wheezing was noted, just continued coughing. CT scans and X-rays of my throat and chest returned normal results. After three days in the hospital, my lactic acid and CO2 levels returned to normal. Despite being treated with steroids and cough suppressants, I found no alleviation of my symptoms. I have now received urgent referrals to a pulmonologist, an ENT specialist, and an allergist, and I recently followed up with my primary care physician. Her only recommendation was cough drops and to wait for my upcoming Pulmonary Function Test (PFT). Additionally, the hospital prescribed Pantoprazole for potential GERD, which hasn't significantly helped. My follow-up blood tests revealed that while my CO2 levels improved, they still remain low, and there are no current indications of an autoimmune disorder, though I am awaiting several results. After undergoing the Pulmonary Function Test, the findings were unusual. Though I await an appointment with the pulmonologist, I reviewed the notes from my test. They indicated, "Spirometry is normal. Lung volumes demonstrate hyperinflation and air trapping. Diffusing capacity is normal. No substantial bronchodilator response observed." When I inquired with the technician who administered the test, she mentioned two possibilities: either my lungs weren't inflamed enough to demonstrate a response, which seemed unlikely considering my extensive coughing fits, or the underlying issue might be irreparable with medications. This situation has left me anxious that I may be dealing with more than just severe asthma. For years, I communicated to my doctors that my condition seems to deteriorate, and that none of the prescribed medications eased my cough, yet they continuously reassured me that it was manageable. Now, after being hospitalized, I recognize the critical need to take this seriously. I rarely experience wheezing or fluid but instead contend with a persistent cough similar to that of a long-term smoker. My cough worsens with movement, eating, drinking, taking deep breaths, lying down, waking up, laughing, excessive talking, exposure to extreme temperatures, dry or humid air, stress, and irritants such as dust, smoke, and potent odors. It feels like merely existing prompts my coughing. Although I always have a cough, the triggers mentioned intensify it. I frequently feel congestion in my throat and chest, accompanied by a tight and painful sensation. I have the incessant urge to clear out whatever feels obstructive, but nothing ever emerges. My coughing often leads to dizziness and incontinence. If I'm not actively coughing, I seem to be clearing my throat repeatedly to manage the mucus. During any illness, my cough tends to worsen, resulting in the need for prednisone. Antihistamines provide partial relief solely for nasal symptoms, without helping my throat and chest. When my rescue inhaler does work, its effectiveness lasts only for a short time before I revert to my previous condition. My lungs may feel momentarily unobstructed thanks to the albuterol, but the coughing inevitably returns until my chest aches again. An ER doctor suggested possible diagnoses of Chronic Rhinosinusitis, Post-Nasal Drip, or GERD; however, medications for allergies and acid reflux have not meaningfully addressed my coughing or breathlessness. It does not seem connected to my sinuses but rather feels like my airways are obstructed, hindering deep breaths. Until I meet with the pulmonologist, my best hypothesis has been Cough-Variant Asthma, but given the lack of response to bronchodilators in my PFT, my confidence in that is wavering. In reviewing my results, I cannot help but consider the early stages of COPD or emphysema, especially since my breathing seems to worsen over time, although my age typically mitigates those concerns given my extensive exposure. I've ordered a test for Alpha-1 antitrypsin deficiency from AlphaID to discuss with my pulmonologist just in case. I am certain I have asthma, but I’m beginning to suspect that there may be additional complications involved. For years, my primary care provider dismissed my concerns, despite my insistence that something felt off. It wasn’t until I required EMS intervention that she finally began the referral process to specialists. I find myself in a state of confusion and unease. Has anyone here experienced anything resembling my situation? I'm looking forward to consulting with the pulmonologist about my test results in the coming week or two, but I’m apprehensive that they will simply dismiss my concerns like previous practitioners have done.

Answers (1)

2/7/2026, 8:30:58 PM

OpenHealth AI

It's understandable to feel anxious and confused given your ongoing respiratory difficulties and the challenges you've faced in getting effective treatment and answers. Your symptoms and history are complex, and the need for clarity regarding your condition is entirely valid.

Main Points

1. Symptoms Complexity: Your persistent cough, difficulty breathing, and lack of adequate relief from asthma medications may indicate more than just asthma.
2. Importance of Specialist Input: You're awaiting appointments with specialists, which can provide valuable insights to better manage your symptoms.
3. Monitoring and Documentation: Keeping a detailed record of your symptoms can help during consultations with healthcare providers.

Explanation

You've described a history of asthma, possible underlying conditions, and extensive coughing that has not responded favorably to conventional asthma treatments. Typical asthma treatment usually includes bronchodilators and inhaled corticosteroids. However, since you've experienced minimal relief from these medications, it raises the possibility that additional factors such as chronic rhinosinusitis, GERD, or another underlying lung condition could be contributing to your symptoms.

The results from your pulmonary function test showing normal spirometry, air trapping, and hyperinflation warrant further exploration, particularly the concern that there might not be sufficient inflammation for a bronchodilator response. Your symptoms like severe coughing leading to incontinence and feeling breathless need thorough investigation.

Next Steps

1. Keep a Symptom Journal: Document when your cough worsens, your activity levels, diet, and any associated symptoms (e.g., GERD symptoms). This can be helpful for your pulmonologist and other specialists.

2. Prepare for Specialist Visits: Make a list of all your symptoms, their triggers, previous treatments, and their effectiveness. Bring this list to your appointments with your pulmonologist, ENT, and allergist.

3. Follow-up Tests: Consider discussing additional diagnostic tests with your pulmonologist if your symptoms continue to persist and if there’s no clear improvement. This might include imaging studies or allergy testing.

4. Explore Non-Pharmaceutical Options: Ask about non-pharmacological treatments like breathing exercises or pulmonary rehabilitation, which may help improve your lung function and quality of life.

5. Symptoms Tracking: Monitor your response to new medications like Spiriva, Singulair, or any dietary changes linked to GERD management. Inform your doctors about any side effects or persistent symptoms.

6. Stay Informed: Learn about potential conditions affecting your respiratory system beyond asthma, including chronic cough syndromes and issues related to GERD or sinusitis, which can contribute to airway irritation.

Reassurance

It's important to acknowledge how frustrating this experience has been for you. Remember that many patients face challenges in getting a correct diagnosis, especially with complex or overlapping symptoms. Continue advocating for yourself, and seek clarity from your healthcare professionals. Your next visit with the pulmonologist may provide more insight into your condition and potential treatment options.

Feel free to reach out for more information or support as you navigate this process!