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Mysterious shortness of breath: What has helped you?

Lung Health | Last Active: 13 hours ago | Replies (3425)

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@oldkarl

I have been diagnosed with COPD multiple times. Then I find a reputable pulmonologist to verify the diagnosis, and the pulmonologist each time tells me I don't have COPD. Rather, I have a bunch of genetic issues (I have checked it with a few genetics labs to be sure). Then I forget the COPD until another session. I really would like to know the whole picture, but I am learning. I know I have a pile of things... bronchiectasis, Clarkson's, many cancers (Barrett's, basal cell, etc.), Gelsolin, Warren-Warburg, several encephalopathy forms, etc. But no legitimate test has uncovered COPD. I am beginning to think that COPD, like so many other "diseases" are most commonly diagnosed when the doc simple has no idea what is wrong. There may really be a COPD, but I think at least half the diagnoses are mistaken. A good Whole Genome Sequencing would be much better.

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Replies to "I have been diagnosed with COPD multiple times. Then I find a reputable pulmonologist to verify..."

hi @oldkarl, it's frustrating with all the possible diagnoses but no real certainty, isn't it? I wasn't diagnosed with anything in particular regarding my breathing but it's still frustrating with the lack of answers. It's definitely a day to day learning experience and piecing together a big puzzle. I hope doctors can provide more answers and at least provide some level of certainty.