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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: Finding help for tachycardia (due to POTS)

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › POTS › Finding help for tachycardia (due to POTS) › Reply To: Finding help for tachycardia (due to POTS)

September 6, 2012 at 12:00 pm #2880
abbilou
Participant

Well it took several weeks for the Neuro consult that amounted to nothing. She felt it was likely a migraine disorder, but has no experience with the kiddos conditions nor has much of her history. The kiddo hasnt ever had a migraine and it would seem if the lesions and such in her brain were due to migraines she would have had the migraines first or with. But obviously I do not know. So after a month of waiting they have referred her to a Ped Neuro. Could have just said that all along. From research my guess is it’s to do with EDS or suggesting different connective tissue disorders or a new thing related to EDS. VEDS was never ruled out (and left on the table by the Geneticist) and so I’m thinking we need to do that given there appears to be vessel involvement in her brain.

I am curious if anyone knows if the “relative sparring of brainstem and posterior focca” is another way to say scarring or lesions? I also haven’t clue how to find a Nuerologist with experience in EDS, POTS ETC… Ideally I’d like to take her and her history us to Seattle for Dr Byers opinion. Don’t believe that is possible with her insurance.

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