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@robertaholmes

Btw a little more technicolor. I started my adventure at the medical center in Houston after having a respiratory viral infection in August of 2013. (In retrospect now reminds me of covid) and it was the worst virus of my life. I had no cormobid conditions and was only taking pravastatin for moderately high cholesterol total 224. On September 4th I went in to Walgreens and received my flu and shingles vaccinations. In two to three weeks I developed ataxia, unstable blood pressure and pulse, hypothermia, pseudohypoxia, CFS, hypothyroidism,spacisity,hyperflexia,tremor ...etc. Many more details to mention. I had consults with cardiology,neuroontology, neurology, movement disorders neurology..etc I underwent twelve weeks of physical therapy focused on learning to walk again. I finally determined what I needed to do to develop new neural pathways and added my therapy to the"standard of care". At the medical center I asked for a very experienced Internist to be assigned to coordinate my care with my specialist's and subspecialists. I was told by the largest medical complex in the world if I required that level of care I would have to go to either the Cleveland clinic or Mayo. The physicians in Houston apparently operate in silos and are not utilizing team medicine or coordinated care. It was at this moment I decided I would take on the complex technical role of coordining my care. I really didn't want the stress and learning required dealing with my own internal medical issues. My neurologist thought my condition most likely had a genetic makeup. I set off on educating myself in genetic engineering which I now feel confident in discussing the various detailed aspects of this developing subject. I took my genetic information discoveries to my various physicians and the overwhelming comments were this is not clinical but rather research and could tell by the light in a deer's eyes look I was not connecting.

I could go on and on about my medical center adventures. My current understanding of my condition (self diagnosed) is after having my URVI and stimulating my immune system with the vaccinations I developed Gillian's barre syndrome that consequently adversely effected my cerebral vermis and pungie cells as well as potential brainstem in involvement.

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Replies to "Btw a little more technicolor. I started my adventure at the medical center in Houston after..."

Guillian-Barre Syndrome can have difficult-to-manage long-term effects. You are right, coordination of care is crucial with multiple issues and the current division of medical care into silos. Louise Aronson, MD, has written a full-length book, Elderhood, that addressed this issue as she discusses ageism in our society. Coordinating our own care can become a full-time job, but being advocates for ourselves is necessary to solve many medical issues. I have personally learned a lot about atherosclerosis in managing my own. It feels empowering to know that I have done the best I can to modify what is in my control--diet,exercise, medication--to stay well. Stress management is something I'm still working on, with some success.