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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: EDS related?

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › Coping › EDS related? › Reply To: EDS related?

December 13, 2013 at 4:58 pm #4656
Deuce
Participant

Welcome to EDS, Malapupa – it’s actually great to hear from someone diagnosed at your age, it means you’ve got at least one doctor who thinks outside the box and connected the dots for you. I agree with everything that the other member ‘Eliza and Jordan’ posted in her reply to you, and your experience mimics mine when I was your age, but I wasn’t diagnosed until I was 37, and I’m hypermobile EDS and POTS. I was fainting a lot in my teens, it got pushed off as attention-seeking-faking fainting, pretty disheartening. You may go through periods of time when POTS symptoms get bad and then better, ups and downs. Your symptoms sound very POTS-ish, talk to your doc about having a tilt table test so you can try some meds for POTS. It sure beats having ‘accidental-naps’ under your coffee table because you stood up too fast.

PS: You will be teaching doctors about EDS for the rest of your life, learn everything you can about EDS, POTS, etc. You will have to really bully some doctors sometimes, get good at advocating for yourself, speak up and get heard. Best of luck.

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