Support Scott's Fight Against Mystery Illness

UPDATE: July 9th

Got a referral from UC Davis to Stanford Autonomic Nervous System Division! Best in the US

Hi! My name is Scott Robinson, or “Coach Rob” to the youth I coach.

I’ve been in the Rogue Valley since 2016. I was lucky enough to graduate from Southern Oregon University in 2020, coach high school football at Ashland High School, and be a chef for the local community and tourism at the Harvey Family Restaurants.

Most people don’t know, but I deal with a severe degenerative neurological/autoimmune condition that has yet to get an official diagnosis, let alone any treatment. I have downplayed it to almost every single person in my life. But it is crippling, and I am severely sick, day in and day out.

What got me through it was showing up for others in my life, whether it was coaching youth, personal training, cooking for people in and out of the restaurant, or just a simple smile. Now I am starting to not be able to show up. I can’t even show up for myself, let alone what I live to do—show up for everyone else.

I currently have over 100 episodes a day of symptoms ranging from:

Ataxia (difficulty with balance and coordination, lightheadedness), confusion, loss of control of limbs, racing heart, fainting, stroke-like symptoms, aphasia (difficulty speaking and understanding), and crippling migraines that come in waves of a couple of seconds to hours at a time in the few severe cases. It’s now even bleeding into my ability to heal from other factors, let alone the mental impact.

I haven’t gone more than 30 minutes of my life in the last 4 years without having any of these symptoms. It’s what my life has become.

Only 4 years of “I hope you find answers” and a verbatim quote from an ER nurse after they treated me during a 3-hour episode: “Just keep digging, you’ll find something.” I have been to UC Davis Neurology, Pulmonary, Redding, Medford, Ashland. No one can seem to give any answers, let alone a single sliver of hope.

UC Davis gave me a packet to deal with “Terminal Illness Symptoms.” Ever since then, I lost hope. But after 2 years, it only is getting worse and worse. To be brutally honest… it has killed a part of me to the point I forgot what it was like to live. Knowing that one of these times when I go down, I won’t get back up like the other thousands of times.

I have a chance and opportunity to get into the Mayo Clinic in Minnesota, the best of the best. #1 in the world. But I don’t have the resources. I was also referred to Stanford Autonomic Nervous System Division 7/9/2025

Unfortunately, I just turned 26, and after trying to get treatment since 22 years old, there’s nothing. And since I am 26, I have lost all insurance.

I have come to a breaking point, and after support from friends, family, and community, I have swallowed my pride and admitted I can’t do this alone. I need help. I need hope.

Anything is appreciated, even words of encouragement.