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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 to consider CCSVI?

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › CCSVI › When to consider CCSVI? › Reply To: When to consider CCSVI?

September 3, 2012 at 2:07 am #2864
Dr. Diana
Keymaster

Hello, everyone,
This is soooo important. I pulled my book down for revisions because so many people saw “CCSVI” and jumped to “angioplasty”. New research (soon to be published) strongly tells me that our weak veins and mast cell disease calls for a medical approach, and we are arranging trials now. Our risk of thromboembolism and stenosis is very high — I think we are “special”. It won’t be long, and I’ll be able to take you through the next stage of treatment (it’s like peeling the layers of an onion!). After that, just one more layer! Yea!

Meanwhile, yes, stress and infection can increase inflammation and mast cell degranulation, further damaging our vessels (and decreasing our CSF drainage). Be sure to check with your doctor regularly to be sure that your CO2 is above 22, or Diamox won’t work (and you’ll want to keep an eye on your potassium levels while your at it). I expected to be on Diamox for life, but as my vessel health is improving, I’ve needed MUCH less. I no longer have POTS or dysautonomia, fatigue or brain fog. Yea! I promise to do my best to get you there, my friends. We have to do this next step through trials (red tape. ugh.), but when you see the science, you’ll get it. Hang in my friends, and if you can wait on angioplasty, I’d recommend it… Big hug, Diana

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“Dr. Diana will always hold a very special place in my heart for her selfless devotion to helping everyone, not just the Ehlers-Danlos community. I hate to think what my life would be without her insight and guidance.”

-- Chris Gross

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