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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: hiGH B12 ANYONE? HYPERADRENERGIC POTS Dr. Diana pls help I am newbie

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › The Latest Research › hiGH B12 ANYONE? HYPERADRENERGIC POTS Dr. Diana pls help I am newbie › Reply To: hiGH B12 ANYONE? HYPERADRENERGIC POTS Dr. Diana pls help I am newbie

November 20, 2013 at 3:25 pm #4611
Dr. Diana
Keymaster

Thanks all, My muscle wasting on my right arm seemed to happen over about 2 weeks — it was DRAMATIC. There is a condition called Eosinophic-myalgia syndrome that is a possibility, but diagnosing it is a BEAR. I have a few Eosinophil doctors I can call to try to get referred for an evaluation. It’s tricky because they don’t find eosinophils, but more of a generalized fibrosis/inflammation if they do a biopsy correctly. My blood level of eos is fine, but frustratingly, that can be fine with this condition as the eos are in the tissue, not the blood. But Barb, did you see the video that Charlie1 put up about B12? There is a shot of muscle wasting that looks just like my arm! And did you see the shots of the spines?! They look just like ours! This is from a B12 issue, not from EDS, etc. Because I woke up with hand tingling that I haven’t had in years, I am reconsidering B12 malabsorption again. The only B12 I get now is through food and supplements. We all seem to have G.I. issues, right? If we are not absorbing B12 (among other things), I wonder if returning to B12 shots could help? I saw one posting by a doctor who said that he considers B12 deficiency if blood levels are low OR HIGH. I don’t understand that, though, and I didn’t see it in a journal… Quest Labs, here in the states offers a “Holo-TC” test that can help locate a B12 deficiency. This deficiency can be masked by folate, and most of us take lots of folate, I believe (I know I do!). So, quite the quandry, but I’m all for trying the ‘easy stuff’ first – checking out B12 before eosinophilic disorders. I *think* because of our G.I. issues, many of us have vitamin deficiencies that are difficult to test for. Getting them back in balance is not easy, it seems!

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