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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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Search results

  1. NaxavisDragonLady

    Tracking CCI / AAI MRI & Treatment outcomes

    Diagnosed CCI with supine MRI fall of last year. I was part of the group that Dr. Kaufman initially consulted with Dr. Bolognese about last year. I have have had a significantly positive result to manual traction, but a confusing result to over door traction and collars (not to mention allergic...
  2. NaxavisDragonLady

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Thanks for all of this info and for being patient zero for Dr. K! I just received my diagnosis of craniocervical instability today. Dr. K is helping me find a PT in my area that can properly perform the manual traction and observe the results, and sounds like I will get some type of home...
  3. NaxavisDragonLady

    "Unrest" updates

    The iTunes download isn't from the kickstarter campaign. I just went on iTunes a couple of weeks ago and selected the pre-order for it, and now that it has released on iTunes in the US, I can go to the iTunes store under my purchases and download it. I'm assuming it is probably a completely...
  4. NaxavisDragonLady

    "Unrest" updates

    Just got the email!!! Pre-orders of Unrest on iTunes for my area (Mountain time US) are now available to download!!! :)
  5. NaxavisDragonLady

    "Sensory Storms" with Tonicclonic convulsions

    @pattismith thank you! That atypical part for the seizures along with the myoclonus, movement disorders, ataxia, and migraines ring true for me. Thanks for the link- I am adding it to my article file to bring my doctor!
  6. NaxavisDragonLady

    "Sensory Storms" with Tonicclonic convulsions

    Thanks Wayne!
  7. NaxavisDragonLady

    "Sensory Storms" with Tonicclonic convulsions

    Does anyone else get sensory storms that trigger tonic clonic convulsions? The ER docs claim I have Psyhcogenic non epileptic seizures because I had spells suring a short eeg but no eleptiform activity. However, in all descriptions of PNES they have given me, my symptoms just DO NOT match up...
  8. NaxavisDragonLady

    "Unrest" updates

    Unable to go see this in theaters but learned recently this will be available on iTunes- expected release date of Oct. 10th, 2017 (not sure if this is US only or world wide?). Can't wait!
  9. NaxavisDragonLady

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    So basically this trial tells children they can think themselves well, but it will only work if they don't outwardly express any ill feelings. Then gives them a patient survey asking them how well they feel, AFTER they have been taught that they are not allowed to answer any of these questions...