B.D. – Utah
Describe the symptoms and the timeline of the reaction.
"5/20/21
I am a previously healthy 39 year old, preschool teacher, hiking and mountaineering on the weekends. Prior history of contracting West Nile at 27, fully recovered. No other history of note. I am pro-science and pro-vaccine, and was thrilled at the opportunity to do my part in ending the pandemic. I received my COVID vaccine 11/4/20 as part of a phase 3 trial with Astra Zeneca.
My initial was tingling down my arm, blurred vision, and sound sensitivity. The first night I had a more typical reaction including a high fever that had resolved by morning. When I got out of bed to get ready for work, I noticed my left foot did not work correctly and I would easily walk into the left of doorways. The sensitivity to sound and blurred vision was still there, accompanied by a strong tinnitus.
Within 48 hours it had progressed to sensitivity of light and touch. The clinic told me I likely had MS and told me to get a neurologist to verify this. The neurologist recommended I go to the ER, one of many visits that would happen over the ensuing months.
The ER ruled out MS, transverse myelitis and sent me home. I could only spend time in a completely dark and quiet room. Even touch was painful. My condition deteriorated over the next 2.5 weeks, to the point where my legs began to have trouble, I had lost 20 lbs from extreme nausea and diarrhea, dizziness, and a strange painful vibrating sensation that would move through my body. The painful pins and needles also progressed from my arm to my other arm and face, I experienced strange overwhelming brain fog, heart rate issues, low fevers and even developed the covid cough. I was admitted to the hospital when I struggled to walk and had become incontinent, where they treated me for a severe migraine which unfortunately did not improve my symptoms. I went home with PT and OT to help me learn how to walk correctly again, and try to work on the cognitive impairments. Every single day for months, my focus was just to survive, countless hours trying to just remind myself to breathe, and just hang on for my kids and hope that it would pass. It was the scariest 3 months of my life.
Like the majority of us who present with these strange GBS or MS like symptoms, my tests were largely unremarkable. I was told over and over again that the doctors haven’t seen anything like this and have no idea what it is.
Some of my symptoms have since resolved, no more fevers, no more sensitivities to light and sound, no more extreme nausea, and paresthesia appears to be improving. Yet, I am still largely housebound, unable to work, or even drive. Over 6 months later, I still have a majority of debilitating symptoms, including strange weakness in my legs, tremors similar to parkinsons, and inability to walk very far. Heavy brain fog persists along with strange pressures in my head. Very painful electrical sensation through my body, tinnitus, and fatigue.
This has severely impacted my life and my family’s life. I have had to hire substitutes to teach my preschool classes. We have also had to refinance our home so we can pay for after-school childcare. We have been trying to right this sinking ship for months. My small children now know me as “sick mom” now and have really struggled with this emotionally. I have missed out on 6+ months of their lives now and I have no idea when it will end.
-B.D. - UTAH"
