Living with Guillain-Barre Syndrome

I am a 63 year old woman, who has always enjoyed good health and always taken care of myself -eat right, exercise regularly, keep my weight down, don’t smoke or drink. And yet I was one of the unlucky ones to get GBS!!!! Never mind, it has been a challenging experience to say the least, with a happy ending. I hope that those who are still suffering and their families can know that someone else out there knows how they feel and I hope also to give some encouragement about the final outcome of this nasty disease. I will do my posts in stages, - the Downward stage, the Level stage and the Upward stage, which is basically what happens to all of us who get GBS the timing being a bit different for each person..

PHASE ONE -THE DOWNWARD STAGE - Around Mid December I started seeing a blurred spot in my right eye when doing close work, but it subsided when I stopped the close work. I thought to myself that it may be a problem with my eyes or glasses. I was also feeling very achy and painy and unusually tired, but put it down to the usual aches and pains of getting older. Later I realised that this was probably the early stages of the disease. I had a very mild sore throat in the first week of December, but it got better so quickly, I did not attach any significance to it.

DAY 1 . On 23rd December 2008, as I went about my housework, I had sensations of prickles and pain all over my body, as if I had been in a bed of nettles. In the afternoon I went to the kitchen sink to wash up some dishes and realised that the tips of two fingers in my left hand were feeling strange - sort of prickly and numb. Seeing as I have some Cardio Vascular problems, I worried that this may have something to do with my heart, so made an appointment to see my GP the next day.

DAY 2. The next morning I had the numbness in all the fingertips of both hands and now also the toes. Next day at the doctor, he tested for sugar, cholesterol, thyroid - all with OK results. He gave me a Vit B12 injection and said we should wait for improvement or developments. He assured me it was not a stroke as this would affect only one side of the body - but then what could it be??

DAY 3. The next day was Christmas and I felt awful, in church I was uncomfortable sitting upright and my hands and feet were now more painful and numb at the same time. I could hardly use my knife and fork to eat Christmas lunch. I could not touch anything without extreme discomfort in my fingers. Towards evening I started with terrible stomach pains spreading round to my back - like labour pains. The pain was unbearable and went on all night - no pain killers helped - I eventually just rolled around the bed in agony. At 5.30 am my husband took me to hospital. This was a Public Holiday and we knew the doctor’s surgery would not be open. After a few questions, they took me through to the ER to start trying to establish the problem.

DAY 4. In the ER they did all sorts of preliminary tests, including physical examination, Blood Pressure, lungs, ECG. When I mentioned the numbness, a doctor came and tested the under part of my toes with a needle. It was strange, I could answer him as to where he had pricked me, but the toes felt numb, nevertheless. They then decided to send me through for X rays of the lungs and cervical spine. When these came up negative, I had to go for Ultra Sound scans. This showed a slight thickening on the stomach wall, so they then wanted a CAT scan. They were obviously looking for something which would cause pain in the middle region - perhaps kidney stones gall stones, they even checked the descending aorta for a possible rupture. All this took the focus away from the numbness.

Meantime, the excruciating pain in the waist area was continuing unabated. I was beginning to be worried about the reason for my symptoms - all the tests were coming up negative - a relief in one way, but I needed them to know what was wrong so they can treat it. Eventually they decided to admit me to the hospital for observation and blood test results. In the ward my torment did not cease, the pain killers they gave me were not effective and the standard of nursing was not good - they kept me waiting for ages if I asked for pain medication, but I could hear them chatting away in the nurses station as if they had nothing better to do, and they were very noisy also. The pain in the middle was so bad I kept kicking my feet in the bed in an attempt to divert my thoughts from the unending pain. More to follow in my next post….