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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Dr Goodman (Mayo Clinic) Dysautonomia: Underlying Causes
- Thread starter Belbyr
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Sushi
Moderation Resource Albuquerque
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Good talk but while they talk about dysautonomia in general, they focus on POTS. This is frustrating for those of us who have other types of dysautonomia like neurally mediated hypotension. Most dysautonomia research seems to focus on POTS.
Centime Tara
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What’s the name of this video so I can find it on Vimeo? I can’t get it to play here.
Beyond Autonomic Testing: Screening for Contributing Factors & Underlying Causes - Brent Goodman, MD
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Centime Tara
Senior Member
- Messages
- 177
Thank you!
Interesting talk. I am positively surprised that Mayo not only produces "the bad" (thinking about their GET/CBT recommendations).
At ca. 21:25 he mentions sth. called Hereditary Alpha Tryptasemia Syndrome and how he finds this in his patients with MCAS, having normal tryptase levels. So if they didn't have this tryptasemia they might have elevated tryptase I understood.
https://www.niaid.nih.gov/research/hereditary-alpha-tryptasemia-faq
Edit: I misunderstood. Hereditary Alpha Tryptasemia is about increased tryptase levels, also when there is no mast cell activation. So I don't understand sth...
At ca. 21:25 he mentions sth. called Hereditary Alpha Tryptasemia Syndrome and how he finds this in his patients with MCAS, having normal tryptase levels. So if they didn't have this tryptasemia they might have elevated tryptase I understood.
https://www.niaid.nih.gov/research/hereditary-alpha-tryptasemia-faq
Edit: I misunderstood. Hereditary Alpha Tryptasemia is about increased tryptase levels, also when there is no mast cell activation. So I don't understand sth...
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