1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Give ME the Money
Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
Discuss the article on the Forums.

Dysautonomia blog

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Questus, Mar 16, 2012.

  1. Questus

    Questus Senior Member

    Messages:
    125
    Likes:
    87
    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
     
  2. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Messages:
    1,767
    Likes:
    332
    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.
     
  3. ramakentesh

    ramakentesh Senior Member

    Messages:
    525
    Likes:
    82
    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.
     
  4. adreno

    adreno 3% neanderthal

    Messages:
    2,585
    Likes:
    1,935
    Tundras of Europa
    The question is what causes the autoimmunity in the first place.
     

See more popular forum discussions.

Share This Page