Bardo Burner’s co-editor reflects on her struggle with multifocal motor neuropathy (MMN), a rare and incurable autoimmune disease. She has found much to be grateful for, discovering her predicament is not as hopeless as it first seemed
This morning I woke up, picked up the large mug of tea my husband had left on the table next to my bed, and took a hefty slug. No different from many of the days when I enjoy tea after rising, except that this time I used my right hand, my right arm, and a week ago I couldn’t have done that. Around seven years ago I developed a tightness in the muscles of my right arm, a slight ache that increasingly made commonplace activities like packing my supermarket shopping into carrier bags or lifting a spoon to eat soup difficult. At the time I was spending a fair few of my leisure hours hunched over and tapping away on the tiny keys of a BlackBerry phone. I pushed my anxiety about what might be behind my symptoms resolutely to one side, self-diagnosed RSI and reckoned it’d be reversible once I stopped using my mobile quite so much.
Assuming that it was my fault, I hid my growing muscular weakness, carried on as normal and put off going to the doctor until it was obvious that my arm was becoming increasingly immobile. It took me a year to admit I needed help. I’m right-handed, and as a school teacher this was both my marking and my writing-on-the-whiteboard hand, so it was obvious, even to a doctorphobe like me, that it was time to get this thing fixed.
I ended up in front of an orthopaedic surgeon, who, after consulting X-rays, an MRI scan and the results of two electromyography (EMI) tests, diagnosed a trapped nerve caused by cervical spondylosis. He repeatedly shook his head in bafflement and mumbled that it was an “interesting” case – never good words to hear from a specialist. He also proclaimed that any operation he might perform had the potential to make things worse, and might well introduce pain into the equation. This sounded like a rubbish deal to me so we agreed to “see how it goes” for a bit, and I taught myself a degree of ambidextrousness that kept me ticking over.
A bit turned out to be a few years. Then one Monday morning last year I woke up unable to lift my right arm. Ever the stoic, I ignored it for three days, assuming, hoping, it might go away, but this didn’t feel like a sprain or a tear. Again, there was no pain, just a total lack of connection between my brain and my arm.
By Thursday morning that week I was at the GP, and by the evening I was back with the orthopaedic surgeon, who was amazed at how time flew. The first part of our conversation was us confirming exactly how long it had been, and then the scan, EMI test, and strength checks happened all over again. Nothing had changed, except that it quite clearly had. We were about to say goodbye again, him still befuddled by this persistently “interesting” case, when he suggested a neurologist. A week later, I had a tentative diagnosis of multifocal motor neuropathy (MMN).
I’m a great believer in patients empowering themselves by selective use of Dr Google, but the plain details of this rare disease are not fun reading. You don’t die, which is the good bit, but one immediately stark fact is that as an illness affecting six in every million people, it’s often misdiagnosed for years. As a patient reading about MMN, words like degenerative, debilitating and no cure mean that it’s easy to miss details of the effective treatments that can slow this condition right down.
MMN is a rare neuropathy characterised by progressive, asymmetric muscle weakness and atrophy. Signs and symptoms may include weakness in the hands and lower arms, cramping, involuntary contractions or twitching, wrist drop or foot drop, and atrophy of affected muscles. It’s an autoimmune disease; a condition in which your immune system mistakenly attacks your body. The immune system normally guards against germs like bacteria and viruses. When it senses these foreign invaders, it sends out an army of fighter cells to attack them. The thought of my body attacking its own nerves as if they were the enemy was disconcerting and I felt sad that my immune system could get it so wrong.
That initial diagnosis was backed up within a fortnight by a week of tests and treatment in hospital. This was on the NHS in March 2020, when it was slowly beginning to have much bigger things to deal with, so I’m grateful for the timing and for the speed with which I finally got some tangible help. The condition currently obliterates the function of my biceps and right shoulder, but I was told this could be eased by Intravenous Immunoglobulin Therapy (IVIg). In essence this is a massive dose of other people’s antibodies, separated from donated blood plasma and used to treat a range of conditions from Guillain-Barre syndrome to multiple sclerosis to lupus. There are other things that can work for MMN, but IVIg is effective in around 70 per cent of cases, and I was lucky that it worked for me.
Within four days of treatment I woke up and had most of the use of my arm back. My googling suggested IVIg might happen every six weeks or so, and I had a second dose a few weeks later. By this point, having had extremely limited use of my right arm for so long, and having been exhausted by the futile and pathetic battle going on inside me, I felt like Superwoman.
I had regained some significant use of my arm; hell, just being able to lift it above my head for the first time in ages felt like a miracle. I won’t get all of it back – the diagnosis was too long in coming for a condition in which time is of the essence – and I have very little bicep strength, but it’s good enough. My neurologist and I agreed that I’d not have regular treatment, and so mine is on demand. I ask for an infusion when I feel myself needing it. Last time I managed six months between doses. My googling hadn’t suggested so long a stretch between doses was even a prospect.
Last week, at the height of the pandemic, I spent five days as an outpatient after a relapse left me weak and weary. I was tucked away in a remote corner of a large Essex hospital in which one third of in-patients currently have Covid-19. It was where they could safely fit me in.
I spent this time sitting upright on a small plastic chair as 10 bottles of IVIg were drip-fed into my poor misguided immune system. Normally patients have a comfy chair or bed to snooze in,
but I’d have been happy sitting in the car park, as long as I got the treatment. It’s a long, slow, uncomfortable business that can leave you feeling grotty for a few days, but when it works, it keeps the demons at bay for a while. The effects eventually wear off, and time between top-ups often narrows, but it really is a magic potion.
I had plenty of time in hospital to mull over several things I am thankful for and a few things I’ve learnt. Primarily, I’ve learnt to see the importance of good health, the need to fight for it, and the ability to accept help when it’s offered. That last bit is hard. I’ve taken good health so much for granted that it became an ingrained part of my identity. I’ve also become used to hiding the bits I can’t do anymore; admitting them seemed like a failure. I’ve learnt the hard way that when it comes to health, you should go to the experts and persevere. If it doesn’t feel right, say so, and soon.
I’m eternally grateful to my neurologist, who listened to my symptoms and my history, went silent for around five minutes and then said, “I think there’s something that has a 60 per cent chance of helping you lift that arm again.” When I saw him in hospital a month later, after a lumbar puncture and numerous blood tests, he raised the odds to 70 per cent. I’m also appreciative of the power he has given me in choosing when the next dose is necessary.
I’m grateful to the friends and family who helped me deal with this incurable chronic condition, and continue to do so. Texts, lifts, flowers, the odd bag of crisps or box of chocolates that means “I’m thinking of you” – these things matter. Of course I always knew this; it’s just that now I know it more.
I’m humbled by the admin staff and by the nurses at the hospital, who found a tiny room for me to get the treatment I needed last week, when my right arm was all but useless again, forcing me to fall back on my rather clumsy but much appreciated left hand for basic functions like drinking tea.
I’m also indebted to the online community of fellow MMN sufferers I joined almost a year ago and who have helped immensely with advice, good sense, humour and support.
A few days ago a young woman posted for the first time. I recognised the shock, desperation and fear in her words as, freshly diagnosed, she faced those harsh internet facts and tried to process a future that seemed suddenly and dramatically altered. The warmth, honesty and support she received amounted to a reassuring “it’ll be all right” from the people who understand her situation most.