Doug

AEA Community Support Group

What motivates you in your work at the AE Alliance?

The biggest motivating factor is the opportunity to help other people who are going through the AE experience, especially those that are just starting their journey. For me and my wife and children, the flares I’ve had have been very traumatic. I’d like to offer our experience in getting care and making it through this challenging time.

Doug's Journey to Diagnosis & Treatment

My journey with AE may have begun in the fall of 2014. I started to feel very agitated and lost 20 lbs. in about three weeks, I also lost hair and my voice. I went on short term disability for my position as an outside salesman in medical equipment financing. I was blessed by my wife Jeanette who tirelessly took me to see several doctors in the Seattle area where we reside. We could not get a diagnosis from anyone other than general anxiety. I was evaluated and cared for at Amen Clinic in Costa Mesa, CA by a double certified (neurology and Psychiatry) physician who helped stop my decline. Then, I worked with Traumatic Brain Injury Northwest under ownership of Dr. David Burns. His forty hour, week long neuroplasticity therapy combining simultanous “brain puzzles” and exercise helped me snap out of the brain fog. Miraculously, I went back to work in November of 2019. My wife and I feel that we were blessed by a miracle from God.

I successfully returned to my sales position and was a high performer until the fall of 2019. Then I began to experience symptoms similar to those I experienced in 2014. My wife did a lot of research on brain related diseases and had a hunch that I had an autoimmune disease. She obtained an appointment with a prominent neuro immunologist at Massachusetts General Hospital in Boston. Dr. Venna agreed that I might have a specific Autoimmune disease called Hashimoto’s Encephalopathy. I began a regime of infusions for five consecutive days each month. The side effects from the IVIG were awful but I began to improve by June of 2020.

I’ve had some flares of the disease in 2022 and 2023 when Medicare refused to cover IVIG and I had to suspend the infusions. Currently, I receive regular IVIG infusions every three weeks and am able to remain stable and to enjoy life. I’m receiving a different brand of IVIG now with a different chemical makeup, and the debilitating headaches have stopped.