On Fri, Dec 22nd 2000, GBS changed my life. That morning I woke up with double-vision and knew that something was terribly wrong. Trying to stand I found myself in real difficulty and found myself bouncing of the walls as I attempted to walk along the hallway. I had just recovered from what I would describe as an ‘average’ cold but little did I realise that within the next few days my whole life would be changed forever!!!
I decided to firstly visit my Chiropractor, a dear friend and a gifted healer and after a number of tests he referred me to hospital to get an MRI. By the afternoon I was very weak, the paralysis was spreading up my body, I couldn’t grip with my hands and my legs felt tingly and strange.
I was then taken to Monash Medical Centre and admitted in Emergency/Casualty, where I remained for 10 hours on a bed in their trauma ward. I remember it was raining heavily that night and lots of road accident victims worked their way up in front of me in the “neurology queue”. Numerous tests were performed on me by emergency doctors in the meantime until my Neurologist finally came in later that night. I was put on a Heparin (anti coagulant) drip as a precaution incase I had suffered a stroke and was told I would remain there overnight. I underwent an MRI, MR angiogram and a CT Scan, which showed a left sphenoid and bilateral maxillary sinusitis and an ENT (Ear Nose Throat) Specialist’s opinion was sought. At that stage I began to deteriorate further and developed increasing left perorbital headache and increasing ataxia (loss of balance).
There is no way that we can see the cause of the pain experienced with GBS, but we can certainly ‘feel’ whether it is getting better or worse. On Monday (day 4) the numbness had reached my knees and my fingers had begun to tingle, I was concerned by the rapid spread of the symptoms. When asked to stand still with my eyes closed I had no stability and my whole body shook. Over the next 24 hrs, I declined neurologically, my ataxia worsened and I developed “intentional tremor” on my left side, at this time my tendon reflexes had disappeared (knee, elbow and ankle). I could hardly grip a toothbrush to clean my teeth as I had no fine-motor skills to even perform the smallest of tasks. On the fifth day after a spinal tap, I was finally diagnosed with the Miller-Fisher variant of GBS, resulting is paralysis of the nerves of the arms, legs, lungs and neck, as well as those controlling the eyes, throat and heart.
I received a full course of Intragam 23 grams/day for five days. A large intravenous drip was placed up my left arm, and about a litre of it was pumped up my arm, each treatment taking about an hour. The consistency of Intragam is like thick, ice-cold honey which produces the feeling like someone forcing a cold, steel blade into my wrist, up my arm and into my shoulder as they pumped this into me. During the first of the Intragam transfusions, my blood pressure was very unstable and I felt very ill during and immediately after the transfusion, slipping into 3 hours of sleep following each session. After two or three days I began to feel a slight improvement. When you are first aware of your condition you are too ill to comprehend the full impact. But as time goes on, you begin to realise your situation, it is then that your attitude is so important.