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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: Year long trial with Diamox – 250mg at night and 250mg during the day + mcas protocal but still miserable!

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › POTS › Year long trial with Diamox – 250mg at night and 250mg during the day + mcas protocal but still miserable! › Reply To: Year long trial with Diamox – 250mg at night and 250mg during the day + mcas protocal but still miserable!

May 10, 2017 at 7:11 pm #6161
Dr. Diana
Keymaster

I’m so sorry you are suffering so much, my friend. There are no easy answers for most of us,
but it does take careful testing to figure out our individual differences. Was your tryptase positive?
We see MANY patients who have (incorrectly) been given a diagnosis of MCAS with negative testing. I think this is a mistake for us!
With negative testing, doctors should consider all conditions that may mimic it before resorting to a diagnosis. Ditto with high intracranial pressure. If symptoms of high pressure do not resolve with treatment, we should get off of the treatment (Diamox in this case), and our doctors should look into conditions that can mimic high intracranial pressure. It is tough, believe me! I would ask your doctors what may mimic your presentation, and to please dig deeper! 🙁

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