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How do you find a doctor to follow this? I got shuffled around from one to the other and each one said they do not handle this. I have given up on finding someone to deal with this.
POTS, NCS, Dysautanomia, possible mild EDS
Wow this is amazing! I was diagnoised with Ehlers Danlos Syndrome 10 years aago. My mom and brother also have it. Sadly we have all suffered terrible with a multitude of issues. Minw mainly Kerataconis which will cause blindness, among other issues. My main concern has been my mom with her heart. This video is so helpful, we are now in the process of trying to find a doctor that can help diagnois Pots or something similar. I am so thankful for Diana, this is a very frustrating disorder, what makes it easier to deal with is having hope, which this site has given me
I live in new jersey, and I need a doctor. I have all the symptoms ou could you suggest ? I do have this..
Dr. Driscoll, I was SO thrilled to see that you are local! I’m 24yrs from McKinney, TX and was diagnosed with Neurocardiogenic syncope after struggling with blackouts and near fainting spells, which include loss of vision, hearing and strength. Now almost 10 years later I have lost my thyroid and gallbladder in addition to being diagnosed with POTS, Ehlers-Danlos Syndrome (8/9 out of 9) and suffering from unexplained chronic bone pain in my legs a few days a month. My condition(s) have been such a mystery to my family, and I know we would love an opportunity to speak with someone who understands what I have. The last time I told my endocrinologist about my Ehlers-Danlos he responded, “So you’re like circus-performer flexible or something?”—- sigh! I was wondering if you accept insurance for your consultations – if not, that’s not a problem. Please let me know as soon as you can. ☺
Hello Dr. Diana,
Thank you for all you do. I need something that I can take to my doctor to help explain this along with MCAD. I had a spontaneous spinal fluid leak in May of 2012 and dx with EDS in August of that year. I have become more and more ill since then. I belive I have Disautonomia/Pots and possbily MCAD which was triggered by my thyroid. Is this possible? I have over 60% or more of the symptoms you described in your video. Thank you
Living with pots….retired nurse, multiple symptoms, gi is bad, get chills, fatigued and migraines….meds make me worse. Would love support and personal recommendations