Hi, my name is Markaiya and this is my Guillain-Barré story.
Before GBS
My battle with GBS started just four days before Christmas, December 21st of 2017. While sitting at my work station, I started to feeling nauseous. My vision had become very blurry. I noticed myself excessively blinking, trying to refocus. I was seeing double. As I tried to walk to the restroom to attempt to vomit, my legs trembled. My knees were buckling. I could barely stand. My heart rate was racing. I left work early and drove myself to the nearest ER. After being there for a few hours, they ruled out a stroke, sent me home and said these were symptoms of a bladder infection. I’ve had a bladder infection in the past and this was nothing like it.
The next day, my legs became more and more weak. My hands and fingers were tingling and starting to feel numb. By night, the sensation of tingling and numbness had risen from the bottom of my feet to right above my breast. I fell while trying to walk up the stairs. I was headed to the ER once again by sunrise. This time I was admitted, just two days before Christmas!
I was seen by a Neurologist right away. I had multiple CT scans, MRI’s, and two spinal taps. By Christmas Day, I was paralyzed from the neck down. Day by day, my throat muscles weakened until I could no longer swallow. Eventually, I ended up with a feeding tube down my throat. My body felt deformed. My muscles felt contracted and distorted . At times I would think my hands and feet were in positions that they were not. I experienced bowel and urine retention and constipation for 14 consecutive days. I was given laxative after laxative, suppository after suppository, and even manual disimpaction. My blood pressure remained extremely high, causing many nose bleeds. Throughout the next few weeks, I received Intravenous Immunoglobulin (IVIG) and a blood transfusion. Mid January, I began to regain mobility, enough to be accepted into one of the worlds best rehabilitation centers, Rancho Los Amigos. After only two weeks of physical and occupational therapy, I walked out of Rancho on my own two feet. My body did not feel 100% better but for me it was good enough.
I was seen by a Neurologist right away. I had multiple CT scans, MRI’s, and two spinal taps. By Christmas Day, I was paralyzed from the neck down. Day by day, my throat muscles weakened until I could no longer swallow. Eventually, I ended up with a feeding tube down my throat. My body felt deformed. My muscles felt contracted and distorted . At times I would think my hands and feet were in positions that they were not. I experienced bowel and urine retention and constipation for 14 consecutive days. I was given laxative after laxative, suppository after suppository, and even manual disimpaction. My blood pressure remained extremely high, causing many nose bleeds. Throughout the next few weeks, I received Intravenous Immunoglobulin (IVIG) and a blood transfusion. Mid January, I began to regain mobility, enough to be accepted into one of the worlds best rehabilitation centers, Rancho Los Amigos. After only two weeks of physical and occupational therapy, I walked out of Rancho on my own two feet. My body did not feel 100% better but for me it was good enough.
Unfortunately, a little less than three weeks after returning home, symptoms of GBS began to return. In a matter of one week, I became paralyzed from the neck down once again.
There was more IVIG treatment along with Solumedrol. The Solumedrol caused a terrible reaction. I ended up with a bad case of anxiety. Before I knew it, I was on life support. During an anxiety attack while attempting to eat and take medication, I stopped breathing, blacked out and received emergency intubation. I remained in ICU for the next 10 days.
Communication with family and friends during his time was most frustrating but eventually we developed a system. My family made flash cards and a list of my common requests for me to refer to when needed. We also came up with body language. For example, blinking once for “yes” or blinking twice for “no”.
Because the time of my relapse was so close to my first episode, doctors were unclear if this had been another case of GBS or if I had transitioned to CIDP. Results of an electromyography (EMG) revealed primary demyelinating sensorimotor polyneuropathy with acquired demyelination and mild axonal loss. Doctors concluded that I did have CIDP.
Because the time of my relapse was so close to my first episode, doctors were unclear if this had been another case of GBS or if I had transitioned to CIDP. Results of an electromyography (EMG) revealed primary demyelinating sensorimotor polyneuropathy with acquired demyelination and mild axonal loss. Doctors concluded that I did have CIDP.
Here is the list of request and needs I would reference during my days on the ventilator.
I made my way back to Rancho Los Amigos again. Just as before, I recovered surprisingly quick and returned home after only three weeks of rehabilitation. Since then, I’ve relapsed twice more, both times less dramatic as before. Still til this day, the trigger for my initial episode is unknown. However doctors suspect that already having Lupus May have played a role.
Day by day, my family documented everything that took place during my experience with GBS/CIDP. This included symptoms, medications given, test taken, etc.
Throughout this whole experience, I continued to give God recognition. He surrounded me with the greatest support team. I am thankful for each and every individual that said a prayer for me, even in the midst of confusion. I am thankful for those that joined hands in prayer around my hospital bed, crying as I cried. I thank God for my Doctors, my Nurses, and my Physical/ Occupational Therapists. I am thankful for every single visitor, every text, and every call. I truly believe that all of the support given made a difference in my recovery. I am also thankful for every single donor that made my IVIG treatments and blood transfusion possible. Losing total independence in a matter of days is something no one could prepare for.!
•Location: Chino, California
•Age of diagnosis: 29
•Date diagnosed: March, 2017
•No residuals unless relapsing: tingling, numbness, weakness, loss of mobility
•Instagram: regularmook
•Treatments used: IVIG maintenance every 3-4 wks, Prednisone, Gabapentin, Zoloft, Plaquenil,
