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Mysterious shortness of breath: What has helped you?
Lung Health | Last Active: Oct 23 10:20am | Replies (3405)Comment receiving replies
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.
Replies to "hi @oldkarl, it's frustrating with all the possible diagnoses but no real certainty, isn't it? I..."
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@gabrielm, yes, it is frustrating. One question: Did you have the Whole Genome sequenced by a certified clinical genetic house trusted by Medicare, or just a partial from a non-certified group? Most of the partials run less than 1% of the whole pattern, and probably will not be covered. Medicare tells insurance to cover it if the doc signs the order, and the genetic house has a history of working with Medicare. Next, do you have a good geneticist you trust? There is a good organization of geneticists who can help you find someone. You might also talk to one of my favorites, Ambrygen.com, or to AYASS.com (I think that is right. It is a pulmonary care house who have done well with me.) oldkarl