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My experiences with a neurological condition.
My memory isn't what it used to be but this is what I remember of my encounter, first with peripheral neuropathy, and then with CIDP. In 1980 I first noticed that my feet were constantly cold, numb and occasionally tripped over them. I went to my doctor and he told me that I had a poor circulation. I returned to work and over a period of a couple of years discovered that I was starting to stumble more often and could not grip properly with my hands. I was also developing chronic fatigue and a loss of short term memory, and then my hands and feet really started to go numb and I was noticing skin sensations like I was crawling with ants. After several visits to the doctor he eventually sent me to a specialist. He thought it may be that I had pinch nerves and so sent me to an osteopath. The osteopath was arrogant and very rude to me and my wife He said that I was wasting his time, and he said that I was just being stupid and the problem was all in my mind.
The numbness and the tripping over became much worse and after two years of consulting the doctor I was eventually sent to a neuropathist, who immediately placed me in hospital and took a large number of tests including EMG, Lumbar Puncture and numerous blood tests. He confirmed my suspicions that I had peripheral neuropathy. After considerable discussion between myself and the neurologist it was thought it was most likely to be caused by a chemical with which I was in contact at work. I proceeded to list all the chemicals that were in the use in the factory where I was employed, after an elimination of the majority of the chemicals by consultation with the poisons register it was found that the most likely offender was n-Hexane, a known neurotoxin.
After consultation with the health department I was given a chemical monitoring device and for one week during normal work I was measuring the amount of n-Hexane in the atmosphere, during this week my condition deteriorated. There was noted to be some n-Hexane in the atmosphere but not sufficient to breach the factory health regulations. I was then removed from the factory and placed in an office for a fortnight - my condition improved slightly. I remained in the offices for three months and my condition stabilised. I was then returned to the factory and after only two days found that my condition was deteriorating rapidly. At which point after discussing the problem with the Manager, he insisted that I return to work in the factory, naturally I refused. I was dismissed immediately, this precipitous action by the Manager was reversed by the Director who conceded that I could not return to the factory and so was moved to another department.
At this point I had drop foot in the left foot and considerable nerve damage often described as sock and glove numbness, together with, chronic fatigue syndrome, random severe skin sensations, hypotension and other mild nerve problems including balance and positional dysfunction. I was told that there was no treatment available for the condition. I put in a claim with the ACC for an industrial work accident. My claim was subsequently accepted as a work accident by ACC and I ceased work
For the next 14 years or thereabouts the condition remained reasonably stable, the only interruption was that I was re-assessed by my neurologist after the first two years, who confirmed that the condition had hardly changed since leaving work. At the end of 14 years during which, on many occasions, I twisted my ankles. I had developed a permanent dropped foot.
I then found that my condition was again deteriorating, I was sent to the same neurologist for the third time and he confirmed that the condition was definitely worse but after repeating all the tests again, including a CT Scan and MRI he told me that I had a developed a condition called CIDP and that it was now not caused by a work accident but by my body's own immune system malfunctioning. Because of this the ACC refused to continue supporting me and I was transferred to WINZ on the Invalid's Benefit. The good news was that by then there were several posssible treatments available for this condition and I was given an orthitic to help my walking by supporting the dropped foot.
From the possible treatments, my neurologist decided to put me on Intragam infusion for five days at 38 units per day. After the first infusion course I developed the side effect (which I had been warned about) of a splitting headache requiring nearly two days in bed, disprin and paracetamol did not seem to have any efect in reducing the headache. After about a week I found that some of my symptoms, skin sensations, exhaustion had reduced marginally and my balance had improved so I was walking much more upright and faster. These effects started to wear off after about four weeks. In the fifth and sixth week I was noticeably going downhill again with loss of strength and chronic tiredness. The Intragam infusion was repeated in the seventh week. The first three days were fine, however, the infusion on the ward on the weekend was not only very quick, under three hours from start to finish but also the solution was so cold that I had to have warm wheatbags applied to my arm to warm it up. After this I had difficulty swallowing (another side effect noted in the documentation about the condition available from the GBS Support Groups in Uk, Australia, USA and here in NZ), choked and had to be Heinricht Manouvered to start breathing again, a very scary, near death experience. It took about 15 mins to recover. I again developed the severe migraine headache side effect which confined me to bed for two days. This made me fatigued and depressed by the whole process, but on the third day I became excited as the drop foot that hadn't moved for many years started to move slightly, about 25mm of movement in the ankle and a bit in the toes. Then on the fifth and sixth day I developed extreme mood swings. Very depressed, with the wrists aching badly, but less fatigued and the sweats stopped, the ants stopped. By the end of the week I was feeling much better and quite strong, my hand writing was markedly improved and my foot was moving slightly more. The third week after infusion I was still feeling strong and more agile and alert but the sweats returned. I then started to notice that if I over exerted myself in the morning then in the mid afternoon I became red in the face I was overcome by sudden fatigue, having to lie down immediately. This could have been brought on because of rapid fluctuations in blood pressure, probably falling too low.
I was still reasonably strong and agile after 7 weeks, but in the eighth week I found the stair access to my house getting harder and harder to climb again, by the end of the week quite hard to climb, requested another infusion.
This time I made sure that the infusion was warm and infused at slower speed for the whole week.
I noticed slight but gradual improvement durung the week but had severe depression on third day, then on the fourth developed the migraine headache much earlier than ever before, I felt dizzy, fatigued, nauseous and my hands swelled up where the cannula had been inserted the previous day. My hands and joints became very painful and my blood pressure dropped right away for a while in the afternoon. On the next day my vein was hard to find and cannula, unlike me as my veins are usually easy to find. On the last day of this infusion set, I had a sleepless night with ants, I developed a headache before the start, my hands were still very swollen, achy and uncomfortable. Over the following week I was fatigued most afternoons even though I didn't do much in the morning, still with the flushing before needing to immediately rest. The headache stopped after two days, but severe ant sensations had come back but stopped again by the end of the week. There was a gradual improvement all round after first week, but with occational sweats and ants but not as regular as usual. From then on I was feeling much stronger and more alert, a few afternoons of fatigue but much improved. Since then I have been staying good and will have to see what develops from now on.
From reading back over this report it seems as though I moan a lot about my condition, but in fact I actually keep most of it to myself, but this account adds details about how I felt to help those who read it to know what to expect if they undergo this treatment. It is not without pain, discomfort or inconvenience but in the end it seems worth it for the relief it gives between sessions.
Copyright: B V Goulstone (1/5/2001)
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This page last checked 03-01-2014