Living with Guillain-Barre Syndrome

Please note - this is the second post for my story

DAY 5. The results of the CAT scan confirmed that there was a slight thickness on my stomach wall, so now they wanted to do an endoscopy - swallow the camera. Just before they put me out, the doctor introduced me to the Anaesthetist who asked me how I was. Again I emphasised the numbness and the doctor said to him ” I think she has some sort of Neuropathy” My neurologist later was horrified at this - firstly that they suspect a Neuropathy but don’t follow up, but that they went on to give me anaesthetic - apparently this can be quite dangerous in GBS Anyway, the camera revealed that I had a couple of small ulcers and hiatus hernia. Dr O seemed very happy to have “found” the cause of the problem - he is a surgeon and that is his field, and of course, they had made sure they had done all the expensive tests on me - thus making their contribution to the hospital profits. That’s how I felt anyway. Dr O gave me a prescription for ulcers and said to go home. I once again asked him about the numbness, he said to report back if it spread. Since waking up from the anaesthetic my legs were very shaky, but seeing as I had never had an anaesthetic before, I thought this was normal. So I was discharged home. The pain was continuing without respite and I could hardly stagger around the house.

DAY 6. The next day I tried to do my normal things, but I was feeling awful - the pain was unending and the numbness spreading up my arms and legs. The shakiness getting worse, too. I phoned Dr O and he said he would get Dr L - a physician - to phone back. Dr L asked questions and said it could be many things, and did mention GBS, but said it did not sound like life or death at that point in time, so I was to visit him at his rooms in the morning.(Monday)

DAY 7. Monday morning my son in law drove me to the hospital and I managed to get out of the car and make my wobbly way to Dr L’s rooms, occasionally staggering and holding onto the wall for support. Dr L started his examination and could find no reflex in my knees and ankles, but the reflex in the arms was still there. Dr L seemed nonplussed and sat behind his desk checking up something on his computer. He said words like - ” Gee I don’t know, I am not sure, it may be GBS, but I don’t quite know what is going on, perhaps we should re-admit you and do a MRI”. Talk about instilling in me a total lack of confidence in him, I was getting quietly desperate, and so weak and weary, and full of pain. I knew there was something horribly wrong when there are absolutely no reflexes in the legs or feet. I could only stagger to the wheelchair and be wheeled to re-admit myself. I was so shaky and full of pain that I could hardly complete the many forms they required to be completed. I felt afterwards that if Dr L was so unsure, why didn’t he refer me to a Neurologist then, at that stage instead of wasting time and money on further tests. It was, after a working day, not a Public Holiday. Anyway, I was re-admitted and phoned my family to tell them. My daughter came to be with me while I had the MRI as I have had one before for a neck problem and got very claustrophobic. I was then admitted to another ward, this time a bit further away from the Nurses station, so it was a little quieter. Here I had another barrage of blood tests, urine tests, they even wanted a stool specimen to do a Porphyria test, which I was unable to supply before I left the hospital anyway!!.

DAY 8. The next day, I was getting progressively weaker, could only stagger to the toilet holding onto the wheely thing they hang the drip on. The pain was continuing and numbness spreading. Dr L did his rounds and told me the MRI and the million blood tests were all normal - and that he thought I must see a Neurologist - there wasn’t one at this hospital, but he would try and find one. I was getting panicky, all tests were coming up normal - what was happening - where are some answers, when was this nightmare going to end? A strange phenomenon I also was experiencing was that sound appeared to be amplified, I had to use the phone and it felt like the noise was going right through my head. Any noise around me caused a terrible pain in my ears and head.

DAY 9. Next morning - this was now New Year’s Eve and Dr L did his rounds. When I told him I was feeling really weak, he asked me to lift my legs in the bed, and I couldn’t. His eyes got as big as saucers, I could visibly see his shock. He rushed off muttering that he needed to find me a Neurologist. An hour later he returned and said he was sorry, he couldn’t find a Neurologist on duty anywhere, he had tried three other hospitals with no luck. I suspect he did absolutely nothing in the last 24 hours since he first said he would try. Now I was devastated, I desperately needed a diagnosis and Dr L just shrugs his shoulders and says he “has tried all over and cannot find a Neurologist on duty, it is after all, holiday time, maybe we will have to wait until Monday when everyone should be back!!!” Another five days!! What if my case was one of those that progress from numbness to total paralysis, including cessation of breathing within a space of a few hours??? How pathetic. And how come, within half an hour of looking on the Internet, going from A to Z, my daughter Debby found Dr B at C B Clinic?? Somewhere in a city the size of Cape Town, there must be a Neurologist who is not on holiday!!!!

I am now crying in desperation and feeling so weak I cannot take control of things and sort this out myself. I was absolutely disgusted with Dr L - pathetic service. I discharged myself from this hospital and Dr O passed me in the corridor as I was wheeled out in the wheelchair. He smiled and said he wished me luck. I felt they were glad to be rid of the problem, and they had done their duty to the hospital by putting me through all those expensive, and unnecessary tests. I went home for the night. It was New Year’s Eve and we had planned to have a party at our home, which had to be cancelled. My husband, however, celebrated a bit on his own and went to bed early. I couldn’t lie down, I was in such agony, and using a kitchen stool to support me, battled through the night trying one chair, then another, in a maze of pain, weariness and worry. At the stroke of midnight I could hear the fireworks going off, and the neighbours celebrating the New Year, but it was definitely the worst New Year I had ever experienced.