Caroline returns with a not uncommon story of a complicated chronic fatigue syndrome (ME/CFS) diagnosis. From fibromyalgia to Ehlers-Danlos syndromes to postural orthostatic tachycardia syndrome (POTS) to mast cell activation syndrome (MAST) to intracranial hypertension to mold sensitivity (and more), the number of alternate or comorbid diagnoses associated with ME/CFS is growing. Now Caroline brings to our attention a new one – cerebral spinal fluid leaks.
I saw Dr. Ian Carroll, an expert in cerebral spinal fluid (CSF) leaks from Stanford University, for the first time recently. He spent 1.5 hours with me and was very thorough, asking me a series of detailed questions he uses to assess patients for possible CSF leaks (see below). I have ME/CFS and hypermobile Ehler-Danlos Syndrome (hEDS) and was referred to him by my autonomic specialist at Stanford because my orthostatic intolerance (OI) picture is a bit muddy and because hEDS, a connective tissue disease, is a risk factor and can cause aneurysms and spontaneous leaks from the dural sac (the tough outermost membrane of the spinal cord and brain).
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