DysautonomicOne

My dysautonomia dx was first (4/97; Mayo) but then I was dx with restrictive cardiomyopathy in 2/00. I primarily have symptoms of right heart failure now. In my case, the etiology and progression of my cardiac (and other systemic) damage is postulated to be due to chronic active EBV. Does anyone have a similar story? :/ Thanks in advance! XOXOX

Hey sweetie, I know this is an old post but I had to write! This is so rare! I developed dysautonomia /IST/OI etc. First, then developed CHF (cardiomyopathy). My EF is improved now so this is so weird! I am sad your Journey is of rare presentation too, but hey at least we aren't alone, hey? *hugs* I have underlying pathophysiology of chronic active EBV & also CFS/CFIDS so I can relate to your situation. I would hypothesize that your CHF is not secondary to POTS but rather the same culprit responsible for your CFS remaining active and/or reactivating & causing the further damage. This happened to me. Please let us know how you're doing now. Much love & be well sweetie! Xoxox ~do