So guys, also diagnosed with dysautonomia, my predominant symptom is extreme dyspnea. However, mine all started with pulmonary embolisms. Even with those resolving and trying every medication for dysautonomia under the sun (northera, midodrine, mestinon, florinef, adderall, desmopressin, ritux, ivig, and plex) my symptoms persisted. Long story short I had a large ASD (atrial septal defect) missed for over 2 years. I found it myself and demanded a TEE. It was closed about 10 days ago and my most recent tests show mild right heart enlargement. So now hoping it will go away and this is due to the asd and not CTPH. But only time will tell. I just want to tell everyone here that dysautonomia is not a diagnosis. PLEASE TRY TO FIND YOUR ROUTE CAUSE!!
Internet HUG TO ALL!!
