Day 3- The Faces of Guillain Barre- Sarney's Story

Tuesday, May 3, 2016 0 Comments

I am 45 years old. I was diagnosed on March 4, 2016. My main symptoms were numbness, muscle pain and fatigue. They were slow to progress.  I was hospitalised immediately once I presented myself to the emergency department of the hospital following doctor’s advice. They gave me 5 IVIG and luckily was able to go home at the end of day 5. It is now five weeks since I have been home and I feel a lot of fatigue. My pain is managed by taking Lyrica. My own GP hasn’t been any help. I am working on my balance with exercises from a physiotherapist, walking my dog as much as I can and hoping my recovery will be soon. 

GBS has made me even more aware of the plight of people living in third world countries.  It greatly disturbs and upsets me what an unfair world we live in. How lucky am I that I can have such first class medical facilities at no cost to myself while others must struggle to come up with huge amounts of money if they are lucky enough to be able to get to a hospital in the first place.

Day 1
My story began when I was celebrating my 25th wedding anniversary with my husband.  We were just past the middle of our six week trip to the Philippines on the very beautiful Tablas Island when I noticed my balance was a bit off. This was only evident as I needed to hold on when walking a short gangplank onto a boat. That evening I noticed a sudden pain behind my knees which would not go away all night despite taking ibuprofen. I was unable to sleep and no position was comfortable.

Day 2
The next day the pain behind my knees had subsided but my upper arms felt sore like I had overused the muscles and my legs were the same.  I couldn’t remember overexerting myself and was a bit puzzled by it. We were on holiday and our trip was all about exploring the unknown so we hopped on the motorbike and rode to take in the scenery of green hills along the spectacular coast.  We were swimming every day and this was our last day in the area so we wanted to find a new beach.  The road was becoming quite steep and slippery and it felt like it might be safer to walk down.  This would normally be something I would have no trouble with at all but I found it tough going.

Day 3
Either today or yesterday the tingling and numbness started in my fingertips and in my feet. The muscle weakness progressed so much that during a 500m walk I was unable to keep up with the group. 
We moved our belongings to Binucot beach where we had a booking for the next four nights.

Day 4
I went to a doctor at the private hospital who suspected diabetes or an electrolyte imbalance and as blood tests showed it was neither she advised me to take a multi B and to come back and see her in a week if I was no better.

Day 5
I was keen to see another waterfall especially having wasted the whole day yesterday at the hospital but I struggled even more and needed to hold my guide’s hand a lot of the way. 

Day 6
Some people we had hired the motorbike from wanted to take us to another waterfall. Luckily this one could be reached entirely by road (except for the parts where we needed to ride through a river so I walked through these instead). By the time we sat down to eat dinner with them I was so uncomfortable and tired and sore that I only lasted and hour and then had to go and lie down but even lying down was not comfortable.

Day 7
Time to move again! This time I was feeling so terrible that I was unable to help with any of the packing or lifting. We had to get two motorbikes to take us and our belongings to Santa Fe to get a boat to Carabao Island. It was very difficult to get onto the boat but I managed and even got onto the top so I could lie down for the ride.

Day 8
Here we were at a beautiful island enjoying the best accommodation we had had all holiday and all I could think about was how I wanted to find out what was wrong with me. We asked around and were directed to a public hospital clinic. We had to borrow a motorbike as this seemed the only way of getting there. The doctor was unable to diagnose me and referred me for ‘further investigation’ in Manila. At this point we called our travel insurance company who failed to call us back. We decided to head back as quickly as possible which involved a half hour boat ride, a ten minute tricycle ride, a two hour bus trip, a six hour wait at Kalibo airport, a 45 minute flight back to Manila. We arrived very late and stayed overnight.

Day 9
Feeling terrible but pleased that tonight we would fly home and finally see doctors who I felt sure could diagnose and treat me for whatever it was that I had.

Day 10
Arrived home and went straight to my mum’s, showered then straight to her doctor. Mum had it all arranged for me as I had been communicating with her about everything. The doctor said I was to go home and rest but if I wanted to I could go to the hospital. I was too tired to travel in the car to my home so I stayed at my mum’s. Later that day the doctor called and advised us to go to the hospital first thing the next morning and she was very concerned I may have GBS. She advised going in the morning so I would be seen straight away. Great advice as this is exactly what happened. 

Sarney lives in Australia. If you would like to contact her, email me; Justine at

If you would like to be apart of "The faces of Guillain Barre" please send your story to the same email.