I am Warren Osborn

living with ALS


This was a horrific shock to be told.

Many friends and people with ALS have asked me to post my ALS thesis and more details about my journey. My muscles began fasciculating in late November 2017, starting with my left tricep. Over a few weeks, the twitches spread to most of my left upper body. Over a two-month time period, the fasciculations spread to my right upper body and then to my lower body. I was constantly quivering and twitching all over my body, and I had zero control. In late January 2018, I self-diagnosed that I likely had ALS (40% chance was my prediction). After seeing a neurologist and having an EMG done, and then seeing an ALS specialist and having a second EMG done, I was officially diagnosed with ALS on May 10th, 2018. Other symptoms such as cramps, muscle spasticity and muscle atrophy in the left tricep had been going on for two to three years prior to November 2017. However, these prior symptoms were progressing so slowly that I never considered ALS as a possibility. But after November 2017, when the fasciculations started, the progression began to move very quickly. … ALS begins with various motor neuron deaths, but the end is always the same — death of all motor neurons and ultimate loss of control of all muscles including voice, swallowing, and breathing. And the person still feels all the itches, pains, cramps and such. This was a horrific shock to be told. One ALS doctor said to me, “You hit the jackpot. This is the worst diagnosis a doctor can give a person.” This statement, while callous in its lightheartedness, I think is factually accurate. … Prior to being diagnosed with ALS, I was researching and reading about ALS and other autoimmune diseases. … I was already a very determined and driven serial entrepreneur. My new health reality, coupled with his statement, lit a fire in me to take my ALS health journey, medical research and treatments into my own hands. I was not going to simply sit and wait to slowly die, like so many do. … I made it my mission to intensely and profusely read ALS clinical trials, studies and research, as well as study protocols. … Every single day, even on weekends, I studied, researched and self-treated. Over the first seven months after my official diagnosis, I read more than 27,000 pages of research. My goal was to cure my ALS and if I failed at a cure, to live 20+ years instead of 1½ to 3½ years. … No two ALS patients are the same. Every one of us has unique DNA and ALS strikes every patient differently. … I want to thank everyone who has helped me.

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