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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: Question for Dr.Diana

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › Coping › Question for Dr.Diana › Reply To: Question for Dr.Diana

April 20, 2015 at 2:43 pm #5444
Dr. Diana
Keymaster

Tough question! All disclaimers in place, OK? Certainly, I am not an orthopedic specialist, right? Having said that, I will share with you some thoughts. Many of us (if not all of us!) have been afraid of having the vascular form, but most of us do not. You say you have some features — it is important to look for features AND review your family’s history. Any vascular dissections, aneurysms, etc? I could be fairly certain I didn’t have the vascular form purely knowing I was still alive (most people my age would have already suffered a fatal dissection, old-timer that I am). Genetic testing for vascular still takes time, but you could ask a geneticist if they could rush it. Honestly, risks of vascular problems are significant in organ surgeries, but my gut feeling is, less so for an ankle. If there WAS a vascular rupture at her ankle (Heaven forbid), I doubt that would be life threatening and the doctors could likely repair it. Because I don’t *think* a ruptured tendon can go forever without being fixed, can you discuss your fears with the doctor so they can be ready for vascular weakness, should it be a part of her condition? Knowing the doctors were in place prior to surgery could be very reassuring. I think the bottom line is open communication about your fears, and honest discussions of risks/rewards. Please keep us posted, and I wish you the very best in getting your daughter the help she needs. Meanwhile, I think I can speak for everyone here — she is not alone in facing disbelief in her condition. WE believe! 😉

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