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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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csf leak

  1. serafim

    Worried about my upcoming lumbar puncture. Has anyone had bad experiences? CSF leaks?

    So my new neuro wants me to get a LP to check for viral neuroinfections (i don’t see the point tbh bc i’m not displaying any signs of acute neuroinfection). I’m super worried about getting a CSF leak and that causing me further issues. I suspect I have spinal issues but there’s no way i could...
  2. SWAlexander

    New fatigue-syndrome clue found.

    New fatigue-syndrome clue found. The Sacramento Bee, 15th January 1992. I was first time diagnosed in 1992, in Sacramento CA. No other doctor wanted to know or confirm it, despite CSF leak fluid through the ears. It was dismissed as "just an allergy".
  3. FreudianSlip

    Trying to sort out some new ME/CFS symptoms related to CSF Leak

    I won't go into all the boring backstory because if I did this post would be a lot longer than it is! I was diagnosed the classic ME/CFS differentiating type in 2013 (suffered from symptoms on/off years prior). I have been managing it pretty well over the years with activity pacing and some 'go...
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