• Welcome to Phoenix Rising!

    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. S

    Testing for Masto and MCAD at MD Anderson

    thank u so much, I am diagnosed with eds classical, chiari 1, and pots/;hyper adernergic/oi, but not sure if I do have ME or the MCAS, could those be giving me my issues/symptoms? and not caused by the eds, chiari and pots/oi? My blood test look normal execpt for the urin methyl above and the...
  2. S

    Testing for Masto and MCAD at MD Anderson

    My urine methyl was 168 not over the 200 good and my tryptase normal but my norepinephrine was 845 standing, how do they diagnose the mcad/mcas? I am having hard to breathe,wheezing now around perfume, smoke, when I drink alcohol, and mosquitoe bite now causes to swell up at the bite to around...
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    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    thank you, I will try the coconut water this week, I know Mayo mentioned salt, but has not gotten my follow up app yet, with them for all the info /my trreatment plan. Is the b12 something I ask the doctor for? and does Physical Therapy/exercsise help? I do abosolutely no exercise. but I...
  4. S

    any cfs doctors in AZ or CA ? thank u

    thank you I just dont know where to find the help, and I need to find some answers and a treatment plan that is effective. I am going to check all the info everyone is sending my way
  5. S

    any cfs doctors in AZ or CA ? thank u

    I have brainstem compression, orthostatic intolerance, possibley eds and cfs, also diagnosed fibro thank you, all for any help/info/
  6. S

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    I was diagnosed with brainstem compression -Chiari 1 in 2006 and Fibro in 2007 and eds in 2008, and now 2013 just had Mayo testing and they say orth inance? 2006-2008 was horrendous, with dizzy, pain, blurry vision, almost passing out, fatigue and about 30 more symptoms. I started on...