I’m Pro-Vaccine and I Now Have Guillain-Barré Syndrome
By: Ayanna Fortson
Tags: Guillain Barre Syndrome, Guillain Barre, Covid-19, Corona, Coronavirus

I’m Pro-Vaccine and I Now Have Guillain-Barré Syndrome

This article is not intended to stop you from getting the COVID vaccine. It is intended to tell you to pay attention to your body whether you get the vaccine, get COVID, or do nothing. Because the scary fact is that Guillain-Barré Syndrome (GBS) can happen under any of these circumstances. Here is my story.

My 1st Pfizer shot was on February 26, and I ended up with pain in my left shoulder as if I’d had a tough personal training session. Easy! It was one of the best days of the pandemic. I was elated to do my part, and I was exhausted from the fear of ending up with a tube down my throat due to COVID. I hadn’t seen any friends in over a year, but I had a tight bubble of my family and fiancee along with a healthy Zoom happy hour schedule, so I was oddly happy and fulfilled considering the emotional wreck I was in March 2020- the beginning of the pandemic.

I got my 2nd Pfizer shot on March 19, 2021- my left shoulder hurt slightly afterward, and that was that. Or so I thought.

My Symptoms Begin

9 days after my 2nd Pfizer shot (Sunday, March 28th), I felt tingling in my feet. On Monday night I felt tingling and pain in my feet, but I was sure it was passing and said nothing since the pain was manageable at a level 2–3. On Tuesday I was getting concerned. My feet were now tingling and in pain all day, and the pain had escalated to a level 5. On Wednesday I suddenly realized that my life could effectively be over soon. The pain was at a 7-8, and I could barely get through my day. My body felt like there were tiny needles shooting electricity into me, and it felt all-consuming. It was unrelenting, and I suddenly understood why the Texas Roadhouse CEO (a COVID survivor) killed himself after suffering through constant ringing in his ears. It became CRYSTAL clear how chronic pain made regular working life impossible, and I wondered how I would get by on disability and how long it would take to kick in after applying. I started panicking while focusing enough to book a doctor’s appointment for that Friday. By the end of Wednesday my calves and thighs were severely cramped, and by Thursday my eyes were tingling and my hands and arms were tingling with pain. I feared MS since it runs in my family. I was terrified and confused and made an appointment with a PCP for Friday, April 2nd.

I didn’t have a PCP, so I booked with whoever had appointments available. I booked first with a podiatrist, who couldn’t help me until I got labs done but he thought it might be diabetic neuropathy. I’ve never had diabetes, but it’s in my family so it seemed possible. My appointment with the GP was for later that afternoon. I told the doctor my symptoms, and that I’d like to have my Vitamin B12 tested after joining a Facebook Neuropathy group where people have said that it’s helped. She pushed back since I eat meat but ran the test anyway, and said she suspected diabetic neuropathy. She said the results would be in by the following Wednesday, aka 10 days after my 1st symptoms. I told her that I was afraid that that was too long, considering how quickly my symptoms were progressing. I was terrified, but didn’t know what else to do- I didn’t want to go to the ER since I was only just now venturing into enclosed spaces, and I didn’t want to sit and wait for hours.

Diagnosis #1

When I returned to my doctor’s office on April 9th, I was misdiagnosed as only having a B12 deficiency, which can cause neuropathy. I did NOT have diabetes. I was told to take the B12 for a few weeks before seeing a neurologist, to see if it improved.

Diagnosis #2

A month later I went to my neurologist, who did some tests with me and asked a lot of questions. I told him I was just closing the loop, nothing to see here! As the appointment was ending, he told me that I have WhatInTheWorldIsHeSaying ScaryScaryScary AmIEvenDreamingRightNow?!!! At least that’s what I heard…

What my neurologist ACTUALLY said is that I have Guillain-Barré syndrome, likely due to the vaccine. He showed me the news reports connecting Astrazeneca to it, and said he’s had an increase in GBS patients lately.

It turns out that I was just lucky. He said my doctor should have immediately sent me to a neurologist who would have sent me to get a spinal tap and to potentially be hospitalized for observation since it can progress so quickly. It’s weird. And I don’t regret the vaccine because COVID patients are also getting GBS. I’m moreso upset that my symptoms were dismissed and I could be dead but I was lucky.

Approximately 30% of GBS patients end up with some paralysis. Approximately 10% end up on a ventilator. Between 3% – 7% die. Some people are normal in the morning and on a breathing machine in the ICU by night. It’s a lot to process, especially knowing that luck is the only thing that helped me.

Thankfully these days my only remaining symptoms are zero reflexes in my ankles and pain and tingling in my feet at night, but only periodically and at very low levels (1-2 pain levels). My neurologist said I should have a full recovery, and honestly I still don’t know if losing ankle reflexes has major impacts since I haven’t stumbled or fallen during this time. I only know because it came up during the physical exam so *insert shoulder shrug*.

Although my neurologist thought it would not help, vitamin B12 helps with the pain significantly, as well as eating One Meal A Day (OMAD) 5–6 days a week. I don’t know why they help, but they do.

I share this because I’m still processing it, and also as a reminder to closely monitor your body- especially after getting vaccinated or after getting COVID. You know your body more than any doctor who may see you as just another appointment, and it’s up to you to advocate for your life. It’s not how it’s supposed to be, but sadly it’s how it is. Be safe!