My Summer of Guillain-Barre Syndrome

The story of Patti

It all began in the earlier part of June when I was unable to get up from the couch and walk. My husband called 911 and I was taken by ambulance to the ER.

Upon my ER exam, symptoms, history and spinal tap, I was diagnosed with Guillain-Barre Syndrome, GBS, a rare autoimmune condition where the body begins destroying the nerve protecting myelin sheath. Once diagnosed, my Healthcare Team immediately began IV treatment of Immunoglobulin Therapy to stop the process of damage to my nerves.

So began my three-week hospitalization of a bizarre and blur of events, including hard word relearning to walk, continued and unexplainable back pain, intermittent disorientation and almost worst of all, the uncommon for me horrid and vivid nightmares. The nightmares were terrifying because they seemed so real and I always felt alone, aware I couldn’t walk all the while in the presence of strangers and unsure of who they were and their intentions and not knowing if I was being held against my will. In one particular nightmare I fearfully wondered how I could notify the police when I had no idea of where I was at!

Once released from the hospital, I continued with outpatient physical therapy for several weeks where I regained the strength and confidence to walk again.

Aside from the tremor in my hand when raising an eating utensil or drinking from a glass, and the increased hypersensitivity to the pre-existing pain and symptoms of Central Pain Syndrome, CPS (unrelated to GBS), I am back to my pre-GBS self.

Guillain-Barre can be fatal if left untreated and I am grateful to the ER team for quickly treating me once diagnosed.

I look forward to the upcoming summer with hopes of a “normal” spring and summer (opposite of the summer of Guillain-Barre!) when my husband and I can enjoy the rewards of planting flowers and tomatoes.

NIH: Guillain-Barre Syndrome
https://www.ninds.nih.gov/health-information/disorders/guillain-barre-syndrome

GBS/CIDP Foundation