He started by reviewing my files and health history, and then the exam included basic physical, BP & HR both reclining and standing, rhomberg test, tandem test, cold sensitivity, poking areas of my body with a pointed stick, tuning fork vibration test, tunnel vision test, touching nose with eyes closed, hand-eye coordination, hypermobility tests (thumbs, knees, elbows), reflexes, looked at scarring, stretch marks, skin elasticity, finger-to-wrist ratio.... Then after some further discussion and questioning, the autonomic specialist at Stanford explained that he suspects a combination of overlapping symptoms from myalgic encephalomyelitis, postural orthostatic tachycardia, and ehlers-danlos spectrum that all lead to the central nervous system hypervigilance which causes my hyper-sensitivities (light, noise, touch, movement, etc). The actual testing that will validate a diagnosis of these conditions will come via referral to ME clinic, dysautonomia testing, and gastrointestinal motility specialist. I am very satisfied, as these are all things I suspected myself, so today's appointment was quite validating. Exactly what we were hoping for.
The Adventures of a "Spoonie" J-Poucher: from Rx drugs to surgery to total disability... the daily fight rages on.
Summary Bio
I have a long list of illnesses (see it here). In 1995 at age fifteen I was diagnosed with ulcerative colitis (a disease of the large intestine), and I lived with it for seventeen years. In 2010, it spread and advanced to a severe diagnosis. I spent a year on a roller-coaster of intensive immunosuppressive drug therapies, only to end up requiring surgery to remove my large intestine and replace it with a j-pouch. After surviving three surgeries, I developed Myalgic Encephalomyelitis, the most debilitating illness of all. (Read "Myalgic Encephalomyelitis" and "The Spoon Theory" to understand more.) Below are the detailed accounts of my ups and downs on this journey.
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