Guillain-Barre Syndrome (GBS) in the Midst of COVID-19

“My hands and feet have been tingling.”

My husband shared that he’d been having these symptoms for a couple of weeks in late June. We assumed it was because of his work belt putting a lot of stress on his nerves or something related to his job.

He had an appointment scheduled with his primary care physician within the week. We figured he would just share the symptoms then. Little did we know his symptoms would drastically change the day of his appointment.

When he woke up that morning, he experienced severe body aches and jaw pain. His legs and arms felt almost completely numb. A subtle numbness was also felt throughout his entire body. He had a severe headache which prevented him from getting out of bed. Between the headache and the jaw pain, he was unable to eat because he couldn’t chew. The pain made it almost impossible for him to sleep.

We immediately assumed he was sick with something serious or that he could possibly have COVID. His primary care doctor wouldn’t let him come in for his appointment that day until he was properly screened for COVID. Unfortunately, this delayed care even further. Waiting for three different COVID-19 tests, it took nearly two weeks to get all of the results back.

During the time we were waiting, we were beyond stressed. We didn’t know if my husband had COVID-19 or something else, but he clearly wasn’t getting better. Our family tried to stay quarantined as much as possible because we didn’t know what was going on. He continued to be in pain and couldn’t eat much beyond soft foods or drinks. It was clear from his gaunt face and body that he had lost a lot of weight.

Our children were concerned, as Dad was home all the time now. He couldn’t play, couldn’t move around, struggled to sleep, and continued to be in severe pain. There was only so much to do keep them distracted. Dad needed a lot of help throughout the day and extra care which they weren’t used to.

All of the COVID-19 tests eventually came back negative.

When my husband finally made it in to see the doctor, blood work was done and other tests, all of which came back “normal” after a couple of days. His symptoms persisted for two weeks, yet his doctor assumed they would go away and that it was due to a strange virus.

He was put on pain medication so that he could sleep. We were happy for the relief, but we were also concerned about him being on pain medication for too long. We were all looking for answers that we still didn’t have. There were so many emotions in those days of waiting. We were praying and waiting with little change.

The ER was not suggested because his symptoms weren’t considered “life-threatening” or “urgent”, but it seemed to be heading that direction and the thought of waiting for things to get worse was more worrisome. How worse did things have to get before we could get answers?  

We wanted to get a second opinion, but because of the COVID-19 delays, we couldn’t get in to see another doctor for three months. Yes, three months. I tried reaching out to multiple neurologists within our state and beyond, all to no avail. It would also be another 3-4 month wait. Our friends who are chiropractors helped with supplements, adjustments, and overall body health until we could get more answers. We were at a loss on what to do with very little help available.

Going into three weeks of the same symptoms, it suddenly got worse. My husband’s pain heightened. He was now experiencing sharp, burning, needle-like pain in his hands and feet. He could barely walk because of this. He had lost close to 40 pounds, wasn’t eating, and we didn’t want to wait any longer. We decided to move him to the ER.

It was late afternoon when I dropped him off. I couldn’t go into the hospital due to COVID restrictions, so I took my kids to the park to play and waited. I didn’t know if my husband would be there all night or if we’d be able to pick him up in a few hours. I messaged friends in the area to let them know that I had finally taken my husband to the ER and we were simply waiting.

I took my kids back home. We ate dinner. I tucked them in to bed, and I called the hospital to check on my husband.

MRI scans and additional tests were taken, all of which came back normal. My fears grew, as I wasn’t sure what was going on. How could all of this be “normal”? I wanted to be there with him, but I couldn’t. We had no idea how long he would continue to be at the hospital.

It was about eleven o’clock at night when I called the hospital again. The ER doctors had reached out to the on-call neurologist. He strongly believed my husband had Guillain-Barre Syndrome.

Guillain-Barre syndrome is where the immune system begins attacking the nerves. There isn’t one particular cause, but it usually develops when the immune system overreacts to a prior infection or threat to the body. Many people who have gotten Guillain-Barre were fighting off the flu or another infection and then develop GBS.

When I looked it up, I saw the most severe cases- inability to swallow, needing physical therapy for months, being hospitalized with plasma transfusions.  It all seemed quite overwhelming and I prayed that my husband wouldn’t continue to lose neurological function.

In most cases, people completely recover from GBS. That recovery time can vary depending on the severity of each case. For some people, recovery is 3-4 months, while for others it is 18-months to years.

Thankfully, because we went to the ER my husband was put on proper medication, Gabapentin, to help the nerves better communicate with the brain and relieve pain. He was also temporarily put on a steroid. He was then immediately set up with an appointment to see the neurologist within the next couple of days after his ER visit.

Praise, God. We had something- a diagnosis, proper medication, and an appointment set up with a neurologist.

At that initial appointment, we learned that GBS often shows symptoms that align with a bell-curve. They slowly get more severe, peak, and then slowly dissipate over 3-4 months in the milder cases. The neurologist was going to continue to follow up with my husband and his symptoms, but he was pretty sure that he had one of the milder forms. If his symptoms did get worse, further testing, like a spinal tap or hospitalization would be necessary, but thankfully he never got worse. Once he started on the proper medication things slowly started getting better.

Through an EMG test, we learned that my husband’s motor nerves were being affected mostly in his lower legs and hands. This was inhibiting his ability to walk and use his hands for basic skills like eating or writing.

After the proper diagnosis and medication, we noticed progress in his healing- he could start eating normal food, he could walk without a cane, his headaches weren’t as severe, he could do one or two chores around the house, and so on.

It’s been almost three months since my husband first started noticing symptoms of GBS, and we are finally at a point where he has returned to some light-duty at work and is able to do more physical activity. We’re hoping he continues to fully recover and be back on full-duty within the next month.  

We’re not sure how he developed GBS since we didn’t remember him being ill before he developed symptoms. At this point, we’re just happy he finally got the proper care and treatment, and that he is continuing to heal.

I definitely feel for those individuals and families who have had to wait for proper care during COVID-19. It was ridiculously stressful for our family, and I would imagine that it continues to be so for many others who have delayed appointments or unanswered health issues in this time. I’m praying our healthcare system can catch up to the demands.

We’re so grateful for the care we received from doctors, nurses, friends, and family during these difficult few months.

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But I called on your name, Lord, from deep within the pit. You heard me when I cried, “Listen to my pleading! Hear my cry for help!” Yes, you came when I called you; you told me, “Do not fear.”

Lamentations 3:55-57

“For I know the plans I have for you,” says the Lord, “They are plans for good and not for disaster, to give you a future and a hope.”

Jeremiah 29:11