I just found you all during a google search. I have been sick for 4 years now. I too, have had so many tests and procedures to no avail. I have been dismissed by many specialists....and I have difficulty regulating my emotions, which makes it to even harder to communicate with many Western MD’s. My initial symptoms were extreme mental fog, anxiety, tinnitus (all of my life, but turned up to an 11 now), nausea and joint pain. They did find that I had pulmonary sarcoidosis, but that wasn’t the reason for my symptoms.

Just recently, I had a ND diagnose me with hEDS using the 2017 Beighton score. Followed by a POTS, MCAS and possibly CCI. I began more symptoms. Extreme dizziness, eye movement causing swirling tinnitus and facial numbness. Finally bc of new and worsening symptoms my primary care physician is sending me to a Rheumatologist to confirm hEDS and trying to get me an MRI with specialty flexion and extension images. I am hopeful for some confirmation and possibly some relief 🥲.