What was your life like before you received the COVID-19 vaccine?
Overall my life was good in spite of having Transverse Myelitis, episodic variant. Mostly fully mobile and active except when having a flare up. I was social and involved with friends and family. I have been retired since 2014.
Describe the symptoms and the timeline of the reaction.
I didn't make it out of my 15 minute observation period at a drive-thru, very large vaccine site at a local sports arena. I started to feel very strange and tingly and signaled to the medical staff I didn't feel well. They directed me to a second area to be monitored but my symptoms worsened. I experienced intense pins and needles in my extremities, was very cold, was not able to control my hands, arms, legs, speech to form words clearly. I was coherent at all times, experienced normal vision, and never felt light headed or warm. My blood pressure was elevated. Within 30 minutes paramedics were called and I was taken to an ER. There I was evaluated for a stroke (not positive for the signs) and given an MRI (negative). The only "treatment" was to give me IV fluids. I was admitted and gradually over three days of hospitalization mostly regained the use of my extremities and speech ( moderate-mild speech impairment). I don't feel they took my symptoms very seriously once they eliminated stroke. Doctors diagnosed a vaso-vagal syncope which was B.S. as I didn't fit the symptoms. Subsequently evaluated by my own specialty doctors ( two neurologists and an infectious disease specialist from a large research hospital) they came to the conclusion I had suffered a mast cell activation. It took about two weeks to regain my normal gait and speech. Eventually, I recovered to my prior level of functioning.
Describe the solutions that helped your symptoms
Fortunately I was lucky that time helped my symptoms. I was never given any treatment. I was so angry that the doctors at the community hospital went for the "fill in the blank" diagnosis that I found the VAERS site and filled out my own report. But I was disappointed to discover that the form is biased toward categorizing adverse reactions into vaso-vagal responses and anaphylaxis- I had to work at finding a way to enter what did happen. No one contacted me from VAERS. I was encouraged (and thus validated) by my own specialists to not have any more COVID vaccines as some people with complicated reactions like mine found their symptoms were permanent and not transitory.
Which solutions were not helpful?
I wasn't offered any treatment while hospitalized. I felt marginalized and discounted since they kept asking me stupid questions like "have you ever fainted before from getting a vaccination?" I didn't faint and never have. Being treated like an overwrought, histrionic female made the whole experience worse and scarier. I understand they needed to eliminate the possibility of stroke but there was no interest in me or my very scary symptoms beyond that. Their attitude made coping much harder.
What would you like others to know?
Listen to your own body and keep going to specialists until you find doctors who take you seriously and are willing to think outside the box. Rely on organizations like yours for information. I wish I'd known about REACT19 then as it would have helped me cope with the disdain and vaccination pressure I got and still do to some extent experience now. Find ways through REACT19 to get your story on record and apply pressure for research on and accurate reporting of these adverse reactions.
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