In late March of 2017, I developed an upper-respiratory viral infection. The virus seemed like a normal cold until my entire body had become excruciatingly sore. The soreness made it unbearable to get out of bed and I spent most of my days sleeping. After enduring this pain for about a week, I went to my PCP but they said it was probably just the flu and I had to wait it out for a few more days until I started feeling better.
The viral symptoms had subsided, but the full-body soreness had gradually faded into numbness. Along with the numbness, I noticed some weakness in my legs – it was hard to keep up with my coworkers at my retail job, and couldn’t complete my usual gym workouts. I didn’t take the weakness seriously until May, when walking up the stairs became impossible. I told myself that whatever was going on was mental – that I always walk up the stairs; there was no reason why I wasn’t able to now. After using a lot of willpower and upper body strength, I made it to the top of the stairs, but collapsed and (thankfully!) fell onto the floor and not down the stairs.
The next morning (May 14), I called my PCP again – still adamant that it was likely nothing. I described the numbness from my belly button down and how I had trouble walking at a normal pace and up the stairs. I also reminded them that I had seen them about 6 weeks prior to this because of a viral infection. Multiple nurses had called me back, asking me to further elaborate on the symptoms I had described from the last call. After about 3 phone calls, the nurse instructed me to get to the emergency room right away and that it could be a “neurological disorder.”
About an hour later, I was in the emergency room getting checked out by the hospital’s neurology team. The team decided that the equal numbness on both sides of my body, absence of reflexes and weakness in my legs would lead to the clinical diagnosis of Guillain-Barre Syndrome, but I would need a spinal tap/lumbar puncture to make the diagnosis official. I was admitted into my own room and was given a lumbar puncture. A few hours later, my doctors came back and told me that the protein was elevated in my spinal fluid and that I did have Guillain-Barre. They were confident that I was at the peak of the syndrome’s course, and that it was “self-limiting” so it would not require further treatment. Thankfully, I was able to go home that night.
I completed a few months’ worth of physical therapy but was advised to work towards bettering my stamina on my own. Currently, I am 11 months out from my diagnosis and am still struggling with lack of strength, near-constant fatigue and full-body soreness if I overexert myself or don’t get enough sleep.
I truly consider myself fortunate not to have had a worse run-in with the syndrome and am adamant with keeping up with my daily vitamin regimen (daily immune support, D3, B12, Zinc), eating well and getting enough sleep when I feel that I need it.
Post diagnosis, I try to wake up with the mindset of gratefulness – I was lucky to have a minor case of GBS, I am lucky that, despite having to put in a bit more effort, I can walk up and down stairs and am lucky that I can experience what life has to offer.
Thanks for bringing more attention to GBS!
instagram: @allieburnsmusic
