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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: Flare Ups

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › Coping › Flare Ups › Reply To: Flare Ups

December 5, 2013 at 7:20 pm #4642
Dr. Diana
Keymaster

I’m so, so sorry to hear this. As scary as it sounds, this is NOT atypical and even I scared away my doctor this week! It seems we all go through the “doctor merry-go-round” fairly regularly, actually. 🙁 We are — how did my doctor put it — “outside her comfort zone”. There is something that your doctor may not be aware of that may help, though. We can have high intracranial pressure WITHOUT papilledema (eye signs). I’m just wrapping up a study about this, in fact. Sometimes a trial with Diamox (just one pill!) can help diagnose this. Interestingly, we are also prone to developing spinal leaks, which can appear as high pressure, but are in fact due to low pressure. It can be difficult for patients and doctors to discern the difference. Special tests are sometimes needed (a myelography can help detect a spinal leak). So, even if the eye doctor didn’t see any signs, high pressure can still exist and treatment can be TREMENDOUSLY helpful. Can you search the forum for tests for B12 deficiency, too? Many of us have digestive problems (and some of us have genetic defects) leading to vitamin deficiencies with nasty consequences. These are too easy to reverse. Most of us are on supplementation or are being tested now. Hang in, my friends…

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