Almost Diagnosed

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I got sick last April, 2020 very suddenly. It started with dry cough, some regurgitation/reflux and then I couldn't breath very badly for two weeks. I felt mildly better for a day, then the breathing difficulties came back and have come and gone to varying degrees since between noticeable but manageable, to incapacitating. I have been through the testing ringer. I was diagnosed with mild GERD and Hiatus Hernia 3cm. I quickly went from 155 lbs to 123. I wasn't big to begin with. My FEV scores were pretty good and improved between May 2020 and late 2020 and I tested negative for Asthma in a methacoline challenge (to test for Asthma), to the point where my pulmonologist finally said he doesn't think there is a pulmonary issue.

However, afterwards a rheumatologist ordered a High Res CT looking for early stage IPF and it came back that my lungs are hyper-inflated. A thoracic surgeon I was seeing to discuss hernia mentioned it indicates mild COPD.

I don't feel great 7 days a week with my breathing, but on the bad days, there is a stinging feeling when I breath in.

Not looking for diagnosis, but all this data is weird; sudden onset, no problems prior, a normal PF Test for my age (49). But the symptoms are gruesome and chronic and the hyperinflation and difficulties breathing weekly for a year just doesn't seem normal.

Just wondering if this is in any way similar to anyone's experiences here with COPD?Can COPD start so rapidly? Does anyone have experience with problems breathing almost daily, yet have normal PF tests? I am very confused and as a primary care taker and 49 year old single father of young girl, I am also worried.

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    Hi rd,

    Can't really advise you as I am not a medical professional but I can talk about my own experiences of 17 years and educational courses.

    I have COPD, I don't believe it comes on quickly at all but very gradually over the years. If you smoke as well as have exposure to other pollutants or lung irritants your lung damage may progress more quickly but certainly never heard of them coming on rapidly.

    Perhaps your doctor can prescribe you a rescue inhaler for those times you experience difficulty.

    With COPD shortness of breathe is an everyday thing, but not usual for a pulmonary lung function test to be normal if there is lung damage, the spirometry test can be near normal but that only measures the outward volume of breathe not the gas exchange etc which a full lung function test does measure. The CT scan also reveals far more information.

    If you continue to have breathing difficulties do discuss again with your doctor.

    Look after your lungs

    Best wishes V

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    • Edited

      Thanks so much for your reply. I appreciate just understanding and hearing the stories of patients because it can really help to frame things. I agree, there are some odd inconsistencies in my symptoms and test results and how it came about. I need to get more answers. I was referred to the long haul Covid clinic in Chicago to see the Pulmonologist there. Hopefully I can get a better understanding of where my hyperinflated lungs are coming from as well as my symptoms that don't seem to get a lot of resolution from inhalers.

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