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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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Dysautonomia blog

Q

Questus

Senior Member
Messages
125
Found this blog on the web, and am amazed at how much testing this person went through at the Cleveland Clinic. He seems very debilitated with this. His story is verbose, and I'm not sure what to make of it yet...An incredible amount of testing!

Am posting the link to his blog because there are some very good resources on his 'Resources' page for people with POTS.

http://www.caringbridge.org/visit/fredperry
 
Sallysblooms

Sallysblooms

P.O.T.S. now SO MUCH BETTER!
Messages
1,768
Location
Southern USA
His diagnosis for his Dysautonomia was the same as mine, Autonomic Neuropathy. I wish he had doctors that knew about supplements and foods to heal the nerves. That is what is needed.
 
R

ramakentesh

Senior Member
Messages
534
Most of the neuropathies are suspected to be autoimmune in basis, meaning that immuno suppression or immuno modulation could stop the autoimmune mediated damage allowing the ganglionic nerves to regenerate.
its interesting to note that low blood flow also causes neuropathy and that only 10 patients were used in the original study of neuropathic POTS and all also exhibited reduced NE reuptake, suggesting that other mechanisms could potentially account for their hemodynamics.
 
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