Fair For Rare: GREG's Story
My story with Guillain-Barre Syndrome (GBS) started while I was undertaking an extended high altitude trek (mostly at 4000-5500m) in Northern India. Four weeks in, I had noticed some increasing weakness. I had also been suffering with almost constant diarrhoea for four weeks, which did not respond to Tinidazole or Norfloxacin. One day, as I was climbing a 5200m pass, I noticed increased weakness. Upon reaching the top and starting the descent, I became disorientated, fatigued, extremely weak and started staggering.
Luckily, on the way down, I had an experienced guide with me who at times saved me from falling down the pass. It was a very difficult walk to our camp and once there, I totally collapsed. I went into hypothermia and had an erratic pulse with indications of altitude sickness, and had to be wrapped in several sleeping bags. I was fortunate we had an orthopaedic surgeon on the trek who started me on steroids and several litres on fluids and after several hours, I stabilised but was still unwell. Due to my condition, it was decided I needed to be evacuated to get better medical aid.
Given our remote location, we had no communications (in India satellite phones are banned) and so my evacuation was by horse over several passes taking two days. I was then taken on a six hour drive to the nearest town and once there, I received some initial aid, but it was decided I need to be evacuated to Singapore. Once in Singapore, I was admitted to hospital and treated for massive dehydration and fatigue and investigation began into the ongoing source of the diarrhoea. The source of the diarrhoea could not be identified and after I was stabilised, I was discharged.
However, after being home for one day, I again deteriorated and was sent to see a neurologist who determined I had GBS. I was immediately put into hospital intensive care and started on intravenous immunoglobulin (IViG) over five days. My symptoms were total muscle paralysis from the waist down including the need to be bladder catheterised. This paralysis dissipated over two weeks and subsequently, I was sent home to start my rehabilitation, which proceeded well - so much so that after three months, I was almost my normal self again.
Four months later, I was walking to pilates (about 500 metres) one day and progressively, I felt weaker and it was harder to walk. I made it to the studio and immediately collapsed and had full muscle paralysis from the waist down. An ambulance was called and off to hospital I went where I was diagnosed with another bout of GBS, put in intensive care and was started on IViG. This time, it was worse than the first episode and the recovery time was much longer. After four months, I still have not recovered and have many days when I have major pain in my legs and back and limb weakness. My muscles are so weak that when shaking a person's hand as hard as I can, I cannot hurt them. I also have poor stability and difficulty doing any walking.
There are periods of good days and then bad days and I still try to do as many things that make my day normal, like running errands and cooking. The good thing is my wife fully supports me and is our bread winner. Of course, this puts a lot of stress and pressure on her, but she shows little sign of this. How great it is to have person in your life who will do almost anything to support and help you!
I am now waiting to see a professor at The University of Sydney next month to get a better diagnosis/prognosis to see if my GBS has developed into Chronic Inflammatory Demyelination Polyneuropathy (CIDP), as well as a second opinion from a specialist neurologist in Melbourne. In the meantime, I deal with my issues each day and try to do so with as many smiles as I can. I also spend as much time talking to others about daily mundane stuff, which helps me to socialise. I’m sure there is a way forward so that I can live a fulfilling life with my loving wife and family.