We were recently contacted by Pete MacKenzie, who was kind enough to share his story with AMSAN
I was diagnosed with Guillain Barré Syndrome (GBS) last May. The 16th to be precise.
Since then my life has been split in two… BGB and AGB. Before Guillain Barré and after. A bit like BCE and CE. Or BBY and ABY if you’re a Star Wars fan.
Before my diagnosis, I had a pretty normal life. I was married, living in East London. I was a Specialist Nurse working with Tuberculosis patients, although we had plans to move back to my home of Scotland. Those plans started to come to fruition when I came North for an informal visit for a new job which would have fitted me down to the ground. After the visit I wasn’t feeling 100% but went to stay with my parents awaiting a potential interview.
Less than a week later, I was in a coma in ITU. Turns out I’d had a dental infection which had gone into my bloodstream. I’d vomited in my sleep and given myself an aspiration pneumonia, leaving me unconscious and fighting for my life. So much so that I was medevaced to Inverness via helicopter. Sadly I was completely unaware of my first ever helicopter ride, a fact which has rather irrationally bugged me ever since.
I awoke 48 hours later, pretty much completely paralysed and on ventilation. GBS was mooted, tests and scans run and I was diagnosed, as I said, on the 16th of May 2024.
The working theory was, and still is, that a bout of Covid in November 2023 had screwed up my immune system. In hindsight, there had been signs in the following months… instances of dropping things, tripping over my own feet, a general loss of coordination. Then the blood-borne infection really kick-started things, leading to the pretty much complete destruction of my peripheral nervous system and the resulting paralysis.
That’s the BGB part.
A course of IV Immunoglobulin was started after which my upper body was pretty much back to normal (my consultant reckons about 80% of how it was before). My legs were not.
Reading about others, I’ve been very lucky. I was only a few days in ITU before I was on a normal ward. I was in hospital for just three months in total, receiving daily physio along with OT input.
(I’ll not mention the new bout of Covid).
I was, and still am, in a lot of pain and further tests ended up with my diagnosis being narrowed down to AMSAN (Acute Motor and Sensory Axonal Neuropathy) where my immune system has attacked the axons of my nerve cells, not just the myelin sheath. Not only is this much rarer (I’ve worked out I’m one in 2 million!) , it also indicates a longer recovery and poorer prognosis.
I was discharged, arguably unsafely, back to my parents’ home. 500 miles from my husband but the neurology team in Inverness were not keen to refer me back down to London. Quite apart from the fact that I was unfit to travel, there was a legitimate worry about the waiting list and whether continuity of care would be severely compromised.
Even so, despite an urgent referral from the hospital physios, it was a full 11 weeks before I saw one in the community. To be fair, my physio has been fantastic since and I firmly believe would still be a lot worse than I am were it not for him. He has a genuinely wonderful manner where he finds something positive in every session, even if it’s just a literal half inch improvement in my footdrop or a new flicker of movement in my big toe.
In hospital I progressed pretty quickly from being completely bedbound, via a gutter frame, to being quite independent with my trusty zimmer. Since being discharged I had moved onto crutches. Unfortunately, a fall which dislocated my shoulder and resulted in another week in hospital has proved quite the setback, but I’m determined to get back on the crutches sooner rather than later.
The weird thing about GBS, I’ve found, is the little idiosyncratic symptoms that you don’t find out about from the textbooks and journals. Internet research will tell you all about the pain, the paralysis, the paraesthesia. These things you can prepare yourself for. What they don’t tell you about are things like the dry skin, the slowing (actually near cessation!) of nail growth or the tight-chested feeling and, I’m sure, many other things not in the literature. Minor things not seen as important to the clinicians but which can be quite troubling to the patients. My slight loss of dexterity has even changed my handwriting! This is where GAIN has been an absolute blessing. I’ve been able to discuss these things with other GBS sufferers and, while not necessarily getting solutions or treatment, just the knowledge that it’s not just you, you’re not alone, and that there are others who can completely empathise with what you’re going through is reassurance enough.
Another thing that wasn’t discussed with me around my diagnosis was the mental health aspects. It was only after my discharge that I noticed a change in my mood. I got frustrated at the slightest things such as not being able to pick something up that I’d dropped, or not being able to quickly nip out of the room to take a phone call or make a cup of coffee for myself. It all added up.
I’m sorry to say that, when I was told that I couldn’t leave the house (there are steps which I was assessed as being unsafe to use yet), I hit rock bottom and threatened to take all the gabapentin in the packet.
Fortunately, I came through that black night and was very quickly referred to and seen by a Mental Health worker who, over time, guided me through the dark and helped me attain a more positive outlook and set goals, some more achievable than others but at least they’re keeping me looking forward and not back.
If there’s one thing I’d want to be taken from my ramblings it’s this. If you feel low, if you feel frustrated, if you feel you can’t go on… seek help. Talk to someone. Google “mental health helpline”. Call them. Adjustment Disorder is a real issue and can feel absolutely devastating.
So here I am now, nine months AGB. I’m only just in my early fifties but I need a raised toilet seat. I used to go hillwalking but now I need a zimmer to get through to the living room. I have zero physical stamina and need a wheelchair if I leave the house. I am very happily married but my husband is at the other end of the country.
However, I also know these things are temporary. If my marriage can survive this, it will surely survive anything. And, while it will take many more months, I know I will walk again. And that’s what keeps me going.
You can follow along with Pete’s journey over on his substack by clicking here
