All about Guillain-Barré Syndrome - David Cleal's case as a Miller-Fisher sufferer

My husband David is a chartered accountant practicing in the South Wairarapa. About 12 years ago – December 1990 until mid-April 1991 – David suffered from the Miller-Fisher syndrome. He was a fit 45 year old at the time.

The dates below are approximate but give you a pretty accurate idea of the time span involved in such a case.

David attended a social function on Friday 6th December, where mixed platters of chicken, salami, tomato and cheese were served. By that evening he felt unwell and chilly, and during the weekend suffered several bouts of diarrhea. He was unable to work during the next week, being too unwell. On Wednesday I insisted on a visit to our local doctor, who had taken over the practice about three years before and had not seen David in the intervening time. Without consulting any past records, he told David that he had the flu, and to go home, take an asprin and go back to bed – rather an inference of hypochondria.

By Friday of that week David began to lose his voice, and on Saturday could only whisper. He complained of a feeling of pins and needles down his left arm and the left side of his face. Sunday saw a worsening of these symptoms along with a drooping of the eyelid and ‘spastic’ movements, with loss of balance when he tried to walk. Fortunately the emergency doctor was not the local one, and he spent some time noting all the symptoms, lack of coordination, fibrillation in the muscles and the loss of sight and voice, then instructed me to drive directly to Masterton hospital.

At the hospital a doctor was present when David tried to eat some jelly and could not swallow it. By repeating the tests done by the GP during the day they were able to assess the progress of the still undiagnosed problem. During the night his condition worsened, and he was extremely embarrassed when he fell down while going into the toiled to deal with yet another bout of diarrhea, completely losing control of both feet and bowel functions.

Monday the 13th December the decision was made to transfer him to Wellington Hospital and the doctor and a nurse accompanied him in an ambulance. Breathing had become difficult and movement of arms and legs almost ceased. David panicked (and so did the Masterton doctor) when David was left in the Emergency admissions for over an hour because the orderlies were at lunch.
Finally he was taken up to the coronary care ward but seen by a neurologist as well as the registrar. The neurologist was able to make a tentative diagnosis of Guillain Barré. While all this was happening David ceased to be able to breath and was suffering from dehydration from the combination of not being able to swallow and diarrhea. A nurse on the ward rang urgently for an oxygen tank which, when it arrived, was found to be empty. The staff had no option but to manually ‘bag’ him as the trolley was taken down to the Intensive Care Unit.

Here he was put on a ventilator, given intravenous fluid and set up with an intravenous food drip (Jevity), catheter etc. By Tuesday David had ceased to have any movement in any part of his body, was blind and could not talk. He later reported that pain was minimal, being mostly stomach cramps from too much Jevity being fed him. When I realized that they were feeding a 5’6” slightly built man 2000 calories a day I managed to persuade one of the doctors to reduce this to a more realistic 1500. This helped, but bowel movements could not be controlled and were an embarassment to David who knew that we could smell when he had voided while visitors were around.

Tests identified the presence of Campylobactor, probably the catalyst for the infection and resulting syndrome.

The staff at the Unit were interested in the case and when a tentative Miller-Fisher diagnosis was given, they obtained research material from the hospital library so that they could get a better understanding of the condition and of the nursing care required. When he had been in the Unit about three days a better bed was obtained, with a thicker mattress and more adjustable parts, assisting the nursing and making life more comfortable for the patient.

Christmas intervened with a variety of staff called in to man the Intensive Care Unit. Treatment was limited to visits from the physiotherapist to pummel his chest to stop fluid settling on his lungs, visits which David later reported to me to be an ordeal, as he was floppy and felt that his head, lolling around, would fall off. A mobile chest x-ray machine was used a couple of times to check for the fluid buildup.
Nursing over this time was variable – the experienced staff was on the whole very good, but some of the temporary ones did not know how to cope with complete paralysis or the regular clearing of the ventilator tubes and ‘bagging’ necessitated by this. One or two seemed to think that someone who could not see or talk must be also either in a coma or unable to feel and hear.

One particular incident is an illustration. A gay male nurse, very experienced in IC nursing, found the regular turning, cleaning etc. to be rather a bore. David’s eyes had become stuck open and had to be irrigated every 20 minutes with eye drops. The nurse took great delight in seeing how high above the eyes he could hold the dropper and still land in the eye, forgetting entirely that David could still feel the pain, but was unable to communicate anything to show this.
The same nurse became irritated with him one evening shift when David, able now to move one index finger slightly and indicated with a small upward movement if everything was fine, or sideways or down if it was not, kept responding to attempts to settle his head on the pillow with a negative. The nurse left him in a huff and did not return for over an hour. One of David’s ears was turned under, with all the weight of his head on it.
Fortunately these were isolated incidents in an otherwise very caring environment.

We made life a little more bearable for David by giving him a small transister radio (with earplugs) and gave the nursing staff the ear plugs. We had discussed with them the type of programmes David was likely to be interested in, and I usually set the radio for him when I left at the end of a visit. When nursing functions allowed, the nurses fixed the ear plugs on for him and David could listen to news, cricket, music or a serial story as he wished. This reduced the sense of isolation and also helped to mask the noise of the ICU, and is something we would strongly recommend for any person facing hospitalization for any length of time.

With the new year the technical staff returned to work and plasma-pheresis was begun. This was very tiring for David but seemed to have a benefit. About this time finger movement improved and he was able to draw letters on the bed clothes for us to guess the words he was trying to spell out. Frustrating to him as he believed that the finger was moving nicely and we were being obtuse in not understanding. In reality movement was jerky and often uncontrolled.

As arm movement began to return the nursing staff worked with him to try to retrain muscles not used for about four weeks. Strength gradually returned to the stage that he was able to sit in an eziboy chair without falling over. Great joy was evident when he was given his first bath with water – he splashed like a baby!

Six weeks after admission to ICU it was judged that sufficient lung capacity had returned to take him off the ventilator, and he was transferred to the coronary care ward. A walking frame was used to first get him standing up, then moving about. Coordination was not good and he was very weak and still blind, although able now to talk again. After a further two weeks, when the walking frame was able to be discarded and partial vision had returned, I drove him back to Masterton hospital. The double vision made the trip over the Rimutaka Ranges quite nerve wracking for him even though he was lying in the back seat of the car.

After a week in Masterton Hospital David returned home, with exercises to do and instructions to contact a local woman who was a very senior Physiotherapist. It is an example of the muscle wastage that she suggested that he wear small wrist weights while doing an exercise of raising his arms over his head. He was lying on his back when she tried this out, and even though the wrist bands were wrapped as small as they could be, as soon as his hands went up the bands shot down to his armpits.

In late March we were able to take a fortnights holiday in Fiji where we swam constantly and this proved to be the best possible exercise. Sight was gradually improving and most of the double vision had gone, returning only when David had become very tired.

Mid April saw a return to his work as a Chartered Accountant, but eyesight is permanently damaged, hand movement restricted, and coordination variable. Staff now constantly moan about his handwriting and golf is too frustrating to comtemplate! The digestive problems took about four years to become relatively normal, initially the mornings were often unpleasant with sudden and explosive trips to the toilet.

Postscript: The eye specialist Sir Randal Elliot was the first person to inform David that the sight problems he was experiencing some nine months after would be permanent, and this has proved to be the case.

Mornings often start with a "grey-out" when he can see no colour and focussing is poor. This gradually comes right after an hour or so.
Similarly, it is sometimes impossible for him to hold a pen and get co-ordinated enough to write. Fortunately the use of a computer keyboard is not a problem as he is a two-fingered expert, and the screen display can be enlarged.