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Lessons from ME/CFS: Finding Meaning in the Suffering
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CFS subgroup - Barré-Lieou-Syndrome

Discussion in 'General ME/CFS Discussion' started by Gandalf, Jun 17, 2014.

  1. Gandalf


    Hey guys. Just wanted to let you guys know that some of you may have Barre-Lieou. Many symptoms overlap, the symptoms are very variable and it is rarely diagnosed because few doctors are aware of this condition.

    The treatment suggested for CFS is also beneficial for this condition because of the positive effect of - especially - folic acid and B12 on neurons.
    Tito, alex3619 and bootsydan like this.
  2. minkeygirl

    minkeygirl Senior Member

    Left Coast
    For those who are interested. This sounds similar to Chiari I Malformation.

    Barré-Lieou syndrome was discovered by and named after Jean Alexandre Barre, M.D., a French neurologist, and Yong-Choen Lieou, a Chinese physician. Each discovered the syndrome independently and described a very wide range of symptoms thought to be due to a dysfunction of the group of nerves called the posterior cervical sympathetic nervous system, located near the vertebrae in the neck.

    What are the symptoms of Barré-Lieou Syndrome?
    [​IMG]Symptoms that characterize Barré-Lieou syndrome are headache, facial pain, ear pain, vertigo, tinnitus, loss of voice, hoarseness, neck pain, severe fatigue, muscle weakness, sinus congestion, a sense of the eyeball being pulled out, and numbness. Other symptoms may include a pins-and-needles sensation of the hands and forearms, corneal sensitivity, dental pain, lacrimation (tearing of the eyes), blurred vision, facial numbness, shoulder pain, swelling on one side of the face, nausea, vomiting and localized cyanosis of the face (bluish color).

    NK17 likes this.
  3. bootsydan


    Very interesting, thanks a lot for posting! A lot of the symptoms for barre-lieou are exactly what I am experiencing. Will definitely look into it further.
  4. Gandalf


    it's tricky to diagnose as well. I have had an x-ray done of my neck in the past - the Doc of course said its impossible to have symptoms like this coming from the neck.
    Now i know that hes a complete douche.

    This desease is only detectable with MRT and it's better if the doc knows what to search for.

    I have a doctors appointment next week concerning this issue.

    I will keep u updated.
  5. NK17

    NK17 Senior Member

    This is very interesting @Gandalf!

    I also have to thank @minkeygirl for finding and uploading the info.

    If this syndrome is tricky to diagnose as Chiari I, most probably it's because most doctors don't know it exists, don't view our imaging tests, frequently just stop at reading the radiologist's report without putting their noses deeper into the images that they have ordered ...

    I'd love to have my MRI's read by Dr. Henderson and/or Dr. Francomano, but I'm too ill to start on that path now.

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