Patient Stories

Trevor

In November 2011, I experienced a severe case of food poisoning that led me to seek medical help. The doctor prescribed an antibiotic, which initially helped alleviate my symptoms, but the pain and fever returned once the antibiotic course was completed. I was then given another antibiotic and tried to resume my normal routine. One day, while washing my face, I noticed a peculiar change in my hand shape. My fingers had more space between them, and my little fingers pointed sideways, causing water to slip through my hands. Despite these unusual symptoms, I carried on with my daily activities. 

Eventually, the food poisoning subsided, and I was eager to regain my strength and energy. However, I felt a sense of lethargy after being inactive for nearly two weeks. My legs started cramping, as if I had exerted myself excessively, even though I knew I hadn’t. I also noticed difficulties in signing and writing. Similar to the hand issue, I didn’t pay much attention and continued with my day. A few days later, I attempted to get something from the kitchen, commanding my legs, back, and arms to help me get up from the sofa. While I managed to stand, I felt weaker, and my leg cramps intensified.

Every evening, I had to climb a flight of stairs before going to bed. Being 30 years old, I assumed it would be effortless, but on the next evening, I struggled. My wife had to assist me in climbing the stairs, and I promised her that if my condition worsened, I would go to the hospital.

The following day, I walked into Mater Dei hospital, but within six hours, I had lost the ability to walk without falling and needed a wheelchair. The doctor suspected Guillain-Barré Syndrome (GBS), but wanted to confirm the diagnosis without rushing. As time passed, I became practically paralyzed from the hips down and from the shoulder area to my fingertips. The doctor ordered a spinal tap, a procedure I was unfamiliar with [at the time], and although I hoped to avoid it, I understood its necessity. I reluctantly agreed to undergo the test.

Thanks to the dedicated work of the medical laboratory teams, I received my test results the next day, confirming a clear diagnosis of Guillain-Barré Syndrome. After spending twenty days in the hospital, I was finally discharged and sent home. The following months were filled with physical and mental challenges. There were moments when I feared I would be permanently disabled, and during weak moments, I searched for any possible solution to alleviate the pain.

When I started attending occupational therapy, simple tasks like pressing an aerosol can seemed impossible. However, with time, I made gradual progress. Initially, I couldn’t stand up from the neuro-gym chair without significant difficulty and assistance, but after nine months, I could do it multiple times without any problems. Although I still attend therapy twice a week, my therapists are focused on improving my walking and finger movement. They have assured me that once I can stand on my heels and my hand dexterity improves, I will no longer require outpatient therapy. I am determined to fight until the very end!

Life is an extraordinary phenomenon, often defying the odds. Many aspects of my life, as well as those around me, have changed since GBS struck. Adopting a long-term perspective (which increases the chances of finding happiness) has been an unforgettable experience.

To those currently battling GBS and reading this, I urge you to stay strong and keep fighting.

Since then, I’ve joined the fantastic people who’ve experienced CIDP, GBS and/or MMN  at the GBS Foundation International and even vonunteered to be the liason for Malta [as well as International] where I provided support to patients in need. There I’ve met fantasic people who could relate in the most direct way, to a celebration of achieving the remarkable feats of fastening buttons, climbing stairs one by one when being struck by polyneuropathic conditions such as these. It has been one amazing journey and I urge anyone to have a look at the fantastic scientifically sound and reviewed content at www.gbs-cidp.org