anyone misdiagnosed with GERD before MAC?

Posted by msanthrope @msanthrope, 7 hours ago

Hello, I am new here and hoping other patients can give me some guidance.

I have had a dry cough with intermittent wheezing for months and episodes of extreme fatigue for a year. The first doc I saw in January was an ENT who diagnosed it as LPR even though she put a scope down my nose and told me my larynx and esophagus looked fine. I do have regular GERD and have been on omeprazole for 6 years which is creating its own issues (bone loss). She added famotidine at night plus Reflux Gourmet - took both for 6 weeks with zero improvement. Got a chest CT in March which showed increasing nodules, tree-in-bud opacities, subsegmental lingular atelectasis and inspissated mucus in the periphery of my upper right lobe plus TIB in my lingula. These nodules have been slowing increasing for years and now have caused symptoms, yet every doc tells me it is GERD. I had a basic bronchoscopy a couple weeks ago that did not access the areas where I have issues and but he did a brush - am awaiting culture results. Three years ago the same nodules (fewer then and non-symptomatic) showed moderate glucose activity on PET. I have a history of breast cancer and melanoma so at the time they were looking for cancer, and the uptake wasn't high enough.

Fast forward to now and three doctors have told me GERD is causing the cough even though I have taken extensive protocol against GERD with no improvement. I have a complicated medical history with hEDS and POTS too but am getting little empathy or solutions from doctors. Scheduled an appointment with a gastroenterologist but cannot get in for 8 more weeks. Would like to do a ph Impedance test with him and possibly an upper endoscopy.

Can anyone share if they were misdiagnosed and how they proceeded? I feel something is off but my doctors are ignoring my symptoms and telling me to just live with it.

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