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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: When an MRI is not enough

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › POTS › When an MRI is not enough › Reply To: When an MRI is not enough

January 13, 2013 at 2:50 pm #3325
Dr. Diana
Keymaster

Hi Diamondcut, If Diamox has been helpful for you, that should convince your doctors to perform an MRV to look for venous abnormalities and thromboembolisms. Most doctors like to do an MRA also, because those of us with EDS tend to have arterial abnormalities, too. It’s just a smart thing to do. Did you see my last video? I’d recommend that you NOT use the term “CCSVI”. Most doctors will have a knee-jerk closed mind. Instead, they will need to look for venous abnormalities which may be systemic (hence the avoidance of the term “CCSVI” which only refers to stenosed jugular veins and azygous veins). What is critical, is to go to a doctor who can differentiate a stenosed vein as a fibrosed vein or a thromboembolism. We are all prone to having “thick blood” and can develop blood clots very easily. Your doctor will need to image your veins and discern whether the stenosis are actually blood clots (needing immediate treatment) or not. Did you see my video on MTHFR defects? It’s good to be screened for common causes of easy blood clotting. I don’t have any of the “common causes”, yet am on a TON of blood thinners. This treatment has had a hugely positive effect on my condition. So, rather than ask about “CCSVI”, you’ll likely do better to ask about “venous thrombosis”, especially of your head and neck. Sound good? Let us know? Big hug…

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