Hi! I’m new here 😊 I was finally diagnosed with hEDS, POTs, and CCI/AAI over the past several months and have been going over tons of testing and treatment options to get a better understanding and handle on things. I had basic symptoms, neck pain, headaches, and fatigue since childhood but after having my son in 2021, things went downhill very quickly. Nerve pain, dizziness and brain fog, neuropathy in hands and feet, every symptom of CCI (you get the idea..) I first went to my PCP for debilitating fatigue and labs were normal. Took it upon myself to dive into research papers and go down every possible path until finding what I thought the main issue might be. Turns out I was right (yay?). I’m seeing a functional med doctor who is amazing and getting genetic testing, tons of labs, imaging, etc. Started PT with an EDS specialist, seeing an AO chiropractor, and getting a handle on what kinds of bracing and aids are helpful. I am also awaiting my first appointment with Dr. Centeno to look at the PICL procedure. This year has been super overwhelming but I am so relieved to know what’s going on with me finally. I’m excited to see everyone else’s experience and stories on here!!

Posted by Tessa Snow at 2023-02-28 04:11:02 UTC