HILARY FREEMAN says she suffers from ‘electric shock-like pains’
Why do some people with multiple sclerosis never seem to get ill? HILARY FREEMAN says she suffers from ‘electric shock-like pains’ despite having a benign form of the condition
This week marks an important anniversary for me. Exactly 22 years ago, a neurologist told me, in a rather cold tone, that the reason I had blurred vision and couldn’t feel my legs was because I had the incurable neurological condition multiple sclerosis (MS).
I was 25 and I thought my life was over. I remember sitting in his office, close to tears, as I imagined a future chained to a wheelchair, blind, incontinent and eventually unable to speak or swallow. My plans and dreams vanished in an instant.
What I couldn’t have predicted was that, two decades on, I would still be mobile, active, able to work and have no apparent disability. As for those plans and dreams, I’ve realised many of them: motherhood, seven published novels, a successful journalism career.
For some, as yet unknown, reason my MS didn’t progress. Neurologists now tell me I have benign MS, a label that can only be applied retrospectively, at least 15 years after diagnosis. I’m in a tiny minority. About three per cent of all people with MS have this form, according to a new study.
Hilary Freeman: having a benign form of MS doesn’t mean I am symptom-free. I still experience tingling, numbness, electric-shock-like pains
It means that I may never end up like so many patients, gripped by muscle spasms and crushing fatigue, unable to walk, befuddled by memory problems and heavily medicated to control widespread pain.
When I had an MRI scan two years ago, it showed that there were many visible scars on my brain and spinal cord, revealing the damage inflicted by the condition.
In MS sufferers, the immune system turns inward and attacks healthy nerve tissue. Yet my condition was seen not to be active – no new damage was occurring. In that regard, I am very lucky.
However, having a benign form of MS doesn’t mean I am symptom-free. I still experience tingling, numbness, electric-shock-like pains, and pins and needles, plus occasional fatigue and blurred vision.
In some ways, it’s rather a poisoned chalice: I’m neither ill, nor well. I often feel guilty, even a fraud, when I’m among people with more severe MS. However, I still have the MS label and have had to deal with its implications for insurance, relationships and employment.
I never know if a symptom is the start of a proper relapse, or the day that my MS stops being benign. Fewer people are benign at 20 years after diagnosis than at 15, and fewer still after 25. I’m also as curious as my doctors are about why I’ve been ‘spared’.
Could it be my unremarkable but balanced diet (lots of fruit and veg, and no meat)? My exercise regime (mainly walking)? Genetics? Or just good fortune? The truth is, doctors simply don’t know. Benign MS is a controversial diagnosis – some neurologists even claim it doesn’t exist. That is why experts at Cardiff University undertook research, published this month, to find out exactly how many people there are like me.
They discovered the numbers are far fewer than previously believed (estimates were thought to be between 15 and 25 per cent). A team led by consultant neurologist Dr Emma Tallantyre screened 2,000 patients with MS in South Wales, identifying 200 who hadn’t taken prescribed MS drugs and who had unlimited walking ability 15 years after diagnosis.
WHAT IS MULTIPLE SCLEROSIS?
Multiple sclerosis (known as MS) is a condition in which the immune system attacks the body and causes nerve damage to the brain and spinal cord.
It is an incurable, lifelong condition. Symptoms can be mild in some, and in others more extreme causing severe disability.
MS affects 2.3 million people worldwide – including around 400,000 in the US, and 100,000 in the UK.
It is more than twice as common in women as it is in men. A person is usually diagnosed in their 20s and 30s.
The condition is more commonly diagnosed in people of European ancestry.
The cause isn’t clear. There may be genes associated with it, but it is not directly hereditary. Smoking and low vitamin D levels are also linked to MS.
Symptoms include fatigue, difficulty walking, vision problems, bladder problems, numbness or tingling, muscle stiffness and spasms, problems with balance and co-ordination, and problems with thinking, learning and planning.
The majority of sufferers will have episodes of symptoms which go away and come back, while some have ones which get gradually worse over time.
Symptoms can be managed with medication and therapy.
The condition shortens the average life expectancy by around five to 10 years.
They assessed these patients’ other symptoms including fatigue, mood, and vision, as well as their ability to work. A very high proportion had cognitive problems, even if they didn’t appear to be disabled. The team concluded that 15 per cent of them were truly benign, with normal function in all areas. Extrapolated, this would equate to three per cent of all people with MS.
Interestingly, many more people self-reported having benign MS than were actually defined as having the condition by the doctors.
Dr Tallantyre says: ‘By monitoring and studying people with benign MS, we could learn more about why it happens. Yet many such patients are discharged by their doctors, and not followed up.’
Professor Raj Kapoor, consultant neurologist at the Institute of Neurology, London, says those most likely to follow a benign course tend to be young women. Recovering well after an initial attack is also a good sign, as is having a long period of respite between attacks.
I ticked all these boxes. And yet it’s a generalisation, not a rule.
Had I been diagnosed today, it’s likely that my doctors would have wanted to immediately start me on new drugs, known as DMDs, that help slow the disease.
Had I taken DMDs, I’d now be attributing my good health to their effects, and I would never have known that my MS would turn out to be benign. In fact, I am not taking any MS medication.
These treatments are a lifeline for many. But my case, and the new research, begs the question: should we be giving aggressive drugs with potentially severe side effects to people who may not need them?
It feels to me a little like playing medical Russian roulette.
‘Whether or not to take DMDs has to be a joint decision taken after a patient has had a full discussion with their neurologist and been given all available information,’ says Prof Kapoor.
On balance, I think it’s important to talk about benign MS. Not only might it hold the key to future treatments, but it’s also encouraging for the newly diagnosed to know that MS doesn’t have to mean a lifetime of disability.
What’s the difference?
Between the small and large intestine?
Bacteria (pictured above) feeds on the mixture inside the intestine and water is absorbed into the blood
Blog me BETTER
The blog: megsmenopause.com
The blogger: Meg Mathews, the former wife of Oasis star Noel Gallagher, hit the menopause in 2016, aged 50, and was shocked by the lack of support and understanding for women enduring the debilitating symptoms.
Meg Matthews (pictured above)
What’s it all about? Meg, left, busts some commonly held beliefs about the menopause and also offers practical advice on HRT.
The small intestine comprises three segments, which form a passage from the stomach to the large intestine.
The duodenum takes in semi-digested food from the stomach and continues the digestion process, before food enters the jejunum, the middle section, and then the ileum, where nutrients are absorbed.
What has not been digested then enters the 5ft-long large intestine, where bacteria feeds on the mixture, and water is absorbed into the blood.
Health Hacks
Yesterday’s meal can curb cravings
You might believe that thinking about a roast dinner will set your appetite racing. But according to a study by the University of Birmingham, remembering your last meal makes you less likely to overeat and snack between meals.
Volunteers either jotted down a non-food memory, such as their journey to work, or a food-related memory, including their last meal.
Those in the latter group then ate far fewer biscuits during a test ten minutes later.
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