- Guillain-Barre Syndrome
Compo's Miller Fisher story
I was diagnosed with Miller Fisher Syndrome on 6th March 2011 but, with the benefit of hindsight and research, I now realise the symptoms had been developing for several weeks beforehand.
We had been skiing in France at the end of January and returned to some very cold weather in the UK. I was walking the dog one cold morning and had a tingling sensation in the small finger of each hand. I thought nothing of it at the time because of the weather, especially as it disappeared soon after getting home and in the warm.
However, over the next few weeks, it became more frequent, sometimes extending up my arms.
At the end of February, I had a sore throat and runny nose, and fully expected it to develop into a full blown cold, but it did not take the normal course and appeared to clear up quite rapidly. However, the tingling sensation gradually got worse becoming very painful in my hands. I went to my GP who thought it was an allergic reaction and prescribed steroids, but these seemed to have no effect.
On the morning of Thursday, 3rd March my thighs flared up with a burning sensation and the skin becoming very red and mottled. I went to my GP immediately, but in the 30 minutes or so that it took to get there, the symptoms had subsided. From this point, things moved very rapidly.
Later that day I was driving along the motorway to visit out granddaughter when the pain suddenly flared up in my hands and arms to the extent that I had to stop on the hard shoulder and get my wife to continue driving. I phoned my GP who advised that I get straight to the nearest A&E, but as we drove on, again the symptoms subsided to the extent that we did not actually go to A&E. For the rest of the day everything was fine and I drove home normally that evening.
The next morning, Friday 4th March, I woke up with severe double vision. Again I went to the GP who sent me straight to the emergency eye clinic at the University Hospital in Coventry. After many tests they decided it was a weakness in the eye muscles and put me down for botox treatment at the next clinic a month later.
On Saturday, 5th March, I was quite weak and spent most of the day lying on the sofa. I had lost my appetite and found eating very difficult.
Finally, on Sunday morning, 6th March, I woke unable to lift my arms and hands. I was unable to swallow and could not support my own weight. Clearly, something was very wrong. The paramedics were called and I was admitted to A&E at Warwick Hospital.
Luck was with me because one of the few doctors on duty early that Sunday morning recognised the symptoms and diagnosed the problem. His immediate assurance was that it would get worse before it got better, but it would get better. He was right! I was immediately admitted to a severe dependency ward but, as my symptoms had become more severe, I was transferred to the Intensive Care Unit (ICU). By this stage I was almost completely paralysed from the waist upwards, unable to swallow and could only breathe with great difficulty. I was given a tracheotomy and the IVIG treatment started next day, as soon as supplies could be located.
I needed 5 days infusion and was warned that things would get worse before they got better. Apparently, it took some 10,000 blood donations to produce the quantity I needed and supplies had to come from the USA.
Over the next week, I had numerous tubes inserted. I was fed through a tube direct to my stomach; a feed to hydrate me; another to administer the immunoglobulin; an arterial canula because they need blood samples every few hours; another for administering other medication; a catheter; and the tracheotomy both to help me breath and to remove mucus that was building up in my chest. For several days I could not move but, towards the end of that week I began to improve. I was able to take sips of water and later to take liquid food supplements. Towards the end of the second week, as improvement continued, various tubes were removed and, as strength returned, started being got out of bed and supporting my own weight with crutches. After two weeks in ICU, I was transferred to the high dependency stroke ward where my improvement continued. I was soon able to take myself to the bathroom and, with help, able to shower for the first time in over two weeks which was like heaven.
A further two weeks later, during which I was having physiotherapy to help my recovery, I was transferred again to a lower dependency ward and, as time progressed, became more and more independent. By now, I was able eat and drink normally, although my appetite was not great at first.
After more tests I was finally discharged from hospital exactly six weeks after being admitted.
Over the next weeks and months my strength continued to improve, although I still had the double vision and weakness in the left side of my face. But even this improved as time went on and the double vision finally corrected itself a month or so later. I occasionally wore an eyepatch but it was more of a nuisance than help.
It is now 18 months since my admission to hospital and I am 99% back to normal. The only remnants are a slight sensation in the side of my face akin to the sensation of anaesthetic wearing off after a visit to the dentist but even this is improving.
If I try to do too much, I get fatigued and have to rest, but usually only an hour or so before I recover enough to carry on. I can do almost everything I could do before although my upper body strength is not as good as it was. I am driving again and I was skiing in the Alps the following January.
I was very lucky that the diagnosis was quick and accurate, and that treatment was started very quickly. This was key to my eventual recovery as was my determination to get better. I was frequently told by the staff not to over-do it, but I pushed myself on and, although I want too far in a few occasions, I am sure it has helped my recovery.
I am sure there is much more I could say and I am happy to be contacted by others in a similar predicament.
PS. Most of this was written in September 2011. It is now November 2012 and improvement has continued. Although I still tire, I can do more each day before I need to rest and, joy of joys, we have booked another skiing holiday for January. I still have the sensation in the left side of my face and left eye - no big deal though and that has improved somewhat since first writing this.
It is now October 2015 and, apart from a slight sensation in the left side of my face, everything is back to normal.
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Thank you so much for sharing Compo. I too was diagnosed with Miller Fisher Syndrome and was curious as to how long it took for your double vision to improve once you received the IVIG treatment? What returned first, your near sight or far sight? For me it seems that my near sight is getting better and I am exactly 41 days post IVIG treatment. Can you give a more detailed description as to what I can expect as milestones in my recovery process concerning double vision and dates would be phenomenal? Thank you again for sharing and I will work on a post to share my story as I hope it will help others as yours has helped me. Thank you Compo.
Commented 3 years ago Ammon 13