The Beginning

I am a 28 year old woman diagnosed with Guillain-Barré Syndrome (GBS). GBS is an autoimmune disorder in which the body creates excessive antibodies that attack the myelin sheath portion of the peripheral nerves, resulting in various degrees of numbness, weakness, and/or paralysis. I'd like to share my story in hopes of shedding light upon this rare disorder. Not only is it rare, it affects each individual so differently that there's no ONE chart you can refer to to break down all physical/mental symptoms, side effects, and how it affects everyone involved. Because this is an ongoing ordeal, I will be blogging frequently and hope to share others' account to highlight similarities and differences. I wish everyone going through this (family and friends included) finds solace in knowing they are not alone. That there's hope and light at the end of the tunnel. Though healing may take what seems like an eternity, each day is a blessing and upon reflection, each little victory is, in actuality, a huge milestone! This chronicle will take a peek into my roller coaster ride with not only GBS, but also my faith and family dynamic.

Growing up, I always had a strange inkling that I was going to die young, that I had no future beyond my 20s. I was partially right. I only nearly died, which has turned my world upside down. It had me questioning my accomplishments thus far and what my purpose was in life. Was this it?

On January 30, 2016, I went snowboarding in Big Bear with friends. I felt a slight tingly sensation on my fingertips and toes after removing my gear but thought nothing of it since it was cold up on the mountains. When the feeling didn't subside the following day, I made an appointment with my doctor for blood work. Being a 'glass half-full' type of gal, I did an extensive Google search of my symptoms thinking the sensation was due to a vitamin B12 deficiency and not some rare disorder I've never heard of. As luck would have it, it was far worse than I had imagined, which has been a testament of my life thus far. As the days passed, the tingling turned to numbness and was spreading upwards in my limbs. I still proceeded to live life normally, going to work and exercising in the evening. My appointment on Wednesday arrived and went smoothly. The physician saw nothing abnormal, but I was already experiencing a mild weakness in my right arm and just walking a short distance had my heart beating as if I had just sprinted. I knew something was very, very wrong. By the time I got my normal test results back on Tuesday, February 9th, the weakness had worsened in my right arm and started to attack my left leg. I couldn't walk to my bedroom door from my bed without feeling short of breath. It felt like I had just run a marathon; my heart was palpitating so fast, even worse than before. The numbness affected my proprioception, making me feel as if I was walking on clouds. I had a tough time finding my balance and resembled a drunk person trying to walk straight but failing miserably to do so. My sister, Tammy, took me to the ER the same day instead of waiting for insurance to approve me to see a neurologist within network. I hate our medical insurance system. We waited in the ER for 3 hours, me in a wheelchair and my sister in a chair right next to me, before being seen. The doctors worried I was going to have a heart attack or stroke because my blood pressure (BP) kept registering so high. They ended up injecting me with a beta blocker to lower it.

2 MRIs (one with and one without contrast), a CT scan, a lumbar puncture, and an EKG later, I received my first round of IVIG on February 10th as a precaution in case it was GBS. IVIG serves to suppress the bad antibodies from further attacking the body, thereby slowing and stopping symptoms from progressing. Most people don't respond to it. With the aid of a walker, I was able to get around for a few days before my legs gave out completely, leaving me bed-bound. I vividly recall my first battle with humility the day prior to becoming bed-bound. I had an argument with the sister that took me to the ER, which subsequently caused me to ban her from showing up at the hospital again. My parents were out of town in Vietnam so my friends took over the responsibility of keeping me company and making sure I was comfortable/had everything I needed. During the evening one night, I used the walker to go to the restroom. After finishing up, I could hardly pull myself up, resulting in me falling to the cold tiled flooring with my underwear around my ankles and the walker hitting into the wall. All the commotion caused my guy friends to worry and ask if I needed help. I promptly yelled back, "No!", feeling so mortified and cherry red in the face. A minute later I acquiesced and accepted their initial offer. One pulled my underwear up for me without looking while the other lifted me up from my underarms. Bless both of them for being such amazing friends. That was a bit off tangent, but serves as a reminder of the day I could no longer use my legs for walking. The five rounds of IVIG (Intravenous Immunoglobulin G) did nothing for me. After I lost use of my right arm, my left leg was next, followed by my right leg then my left arm. It was a very atypical case so they had a difficult time diagnosing me. 

I was sent off to a rehab center even though I was declining and ended up back at the hospital two days later where they placed a Quinton catheter near my clavicle and started me on plasmapheresis February 20th (pictures below). I started to show signs of improvement in the use of my left hand after a couple treatments, but a few days later I had lost use of it again. This was absolutely frustrating and such a blow to my strength and hope. What's even more frustrating is the majority of those afflicted never get an answer as to what triggered the disorder in the first place. How do you try to face a battle that isn't tangible? I attribute mine to possible stress that was being pent up within me. I had just lost out on a potential business opportunity, I lost my job during the initial onset of symptoms, and I was trying to figure whether I should continue pursuing PA school or go down a different path altogether. Maybe I had kept everything inside for so long that it manifested into something my body felt it needed to fight off, only it was attacking the wrong things.

tbc...