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Tuesday, September 13, 2011 4:25 AM
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Ken Torbert
I was a rational empiricist by training and employed as a professor, so thinking was both my hobby and my profession before MS ravaged my cognitive abilities. In May, 2010 I had a balloon angioplasty of the jugular and azygous veins, and when I was packing for the trip home, I experienced overwhelming joy when I realized I was able to keep several thoughts in my head at the same time. I began a close working association with the doctor and observed him perform the procedure on over thirty people from all over the world. I connected with an online community who very generously shared their support, experience, information and research. I watched people with the same diagnosis – MS – undergo the same procedure, but experience very different outcomes. I watched. I read. I thought. I read some more. I thought some more. I’ve come to the conclusion that we share two out of three things in common, and that one of these “things” isn’t really a “thing.” Let me explain. First, the two out of three things that we have in common: 1. We all have MS. 2. We all have problematic veins. 3. We all do not have the same reasons for our vein problems. I speculate that some of us have congenital valvular/venous malformations, some have suffered endothelium injury or trauma from shear stress, some have autonomic dysregulation, and some have hypercoagulability issues, to name a few. Second, the “thing” that really isn’t a “thing” is MS. All this term does is describe a test result (hyperintensity signals as seen on an MRI). I regard MS more as an indicator of disease rather than the disease itself. For example, if a doctor suspects TB, she will administer a TB skin test. A positive result will produce a red and swollen circle at the site. This would indicate the presence of a disease, but would not be considered the disease. In my mind, calling MS a disease is like calling a positive tb test result site a disease. My experience has also taught me that it is IMPERATIVE that we take personal responsibility for our wellness, and do a LOT of medical sleuthing. Learn the language. Keep a notebook. Trust your gut. Ask lots of questions. Then ask some more. Be uncomfortably assertive. Don’t worry about being thought of as a malingerer, or crazy, or an attention whore. Find out WHY you are having flow issues. You deserve to know. You deserve to feel better. jmhoKathleen Lynch
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