How did doctors get it so wrong for 20 years?
That’s how long Made In Chelsea star Jane complained of fatigue and aching joints — and they failed to spot she had multiple sclerosis
SITTING in a doctor’s surgery with her eldest daughter Anna-Louise by her side, TV personality Jane Felstead struggled to take in what the neurologist before her was saying.
For more than 20 years, Jane, 65, believed she had fibromyalgia — a condition that causes aching joints and fatigue. But the doctor said there had been a mistake.
Jane had never had fibromyalgia at all. In fact, she has multiple sclerosis (MS) — a progressive disease of the brain and spinal cord. Without treatment, many people with MS end up in a wheelchair.
even for someone like Jane, who is famous for her role as the no-nonsense matriarch in the TV reality show Made In chelsea (in which she stars alongside her daughter Binky), the news was hard to take in.
‘I was terrified,’ says Jane, who as well as Anna-Louise, 37, and 27-year-old Binky (real name Alexandra), has a son, Oliver, 36, with her now ex-husband Roger.
‘My maternal aunt had MS and was bedridden for the last 12 years of her life, so the moment the doctor said “MS”, all I could see in my mind was a wheelchair.
‘I was too shocked to cry. The tears came later that night when I went home and was on my own.’
MS is caused by the body attacking the protective coverings of nerves called myelin. This leads to inflammation, which interrupts the nerve signals between the brain, the spinal cord and the rest of the body. The nerves themselves are ultimately destroyed.
While for some the symptoms get steadily worse, about 80per cent of patients have relapsing and remitting MS, with flare-ups followed by periods of remission.
Symptoms often begin with fatigue, muscular weakness, sight disturbances (caused by inflammation of the optic nerve) and slowed thinking. Bladder problems are also common. The exact cause is unknown.
KLAuS SchMIeReR, a consultant neurologist at Barts health NhS Trust, says: ‘exposure to a viral infection, the most likely being the epstein Barr virus, which causes glandular fever, is one candidate.’
It is thought the virus may kick-start an autoimmune-type response, when the immune system attacks the body.
‘There is also an association with where you live,’ adds Dr Schmierer. ‘The further from the equator you are, the higher your risk of MS.
‘That’s because living in parts of the world that get less sun affects your levels of vitamin D, which plays an important part in immunological function.’
Women are three times more likely to develop MS than men — it’s thought due to their hormones. Most of the 120,000 people with MS in this country are diagnosed between the ages of 20 and 40, but Jane is not the only one to wait years for a correct diagnosis.
In a 2015 survey of 1,500 people with MS, more than a quarter were originally told they had a trapped nerve. One in ten was told they had depression or anxiety.
‘We hear all the time from people with MS who have gone through numerous misdiagnoses,’ says Susan Kohlhaas, director of research at the MS Society.
‘A GP won’t see that many cases of MS and the symptoms, such as fatigue, are so generic there is too much hesitation to refer on to a neurologist,’ adds Dr Schmierer.
Typically, diagnosis is done using a brain scan for signs of damage, or by taking a sample of spinal fluid to check for inflammation.
Jane is angry she was misdiagnosed for so long. ‘I had been diagnosed with fibromyalgia more than 20 years ago,’ she says.
‘At the time I had three young children, a husband, two houses to run, horses to look after — I was busy so I didn’t have time to give much thought to my health.
‘I was exhausted and was having pains and the odd weakness in my joints, but there’s no cure — I was just told to get on with it.
‘Soon after my fibromyalgia diagnosis, I went to the ballet with my husband and I wasn’t able to get up off the loo. I thought, what’s happened to my knees? And a few years ago I went to the doctor with weakness in my leg and the GP thought it was just muscular weakness because I wasn’t exercising enough because of my fibromyalgia.
‘I also had pains in my eyes and was found to have an inflamed optic nerve but, again, this was put down to fibromyalgia.’
Yet this year she decided enough was enough. ‘It wasn’t just the fatigue — I was feeling dizzy,’ says Jane, who lives in Fulham.
‘Walking to my Pilates class a street away, I would find myself leaning against someone’s wall — and I had exhaustion to the point of collapse. I’d lie awake thinking: “What’s wrong with me?” ’
The GP she saw in February this year was concerned enough to refer her to a neurologist.
‘I had an MRI, a brain scan, a lumbar puncture — BuPA must loathe me,’ she quips.
Four weeks ago, having just become a grandmother to Binky’s daughter India, and with AnnaLouise’s baby Frederick then due any day, she received her diagnosis. ‘The specialist was showing me the brain scan and as she got to the back of my brain her voice changed,’ says Jane. ‘I said: “There’s nothing nasty is there?” And she said: “I think it’s MS”.’
Jane’s first reaction was to ask if she would end up immobile. ‘The doctor said amazing drugs had been developed in the past few years and assured me I wouldn’t be bedridden.’
There are 12 drugs available on the NhS that don’t cure MS but can help halt its progression. They work in different ways, but most aim to reduce the action of immune cells — typically B cells — which are thought to play a part in the attack on the nerves.
‘Without treatment, within eight years, on average, people develop limitations to their walking range, and after 30 years are in a wheelchair,’ says Dr Schmierer.
however, he says after using the drug alemtuzumab, for example, ‘about half of patients stay diseaseactivity free’.
Jane tasked Anna-Louise with breaking the news of the diagnosis to her siblings.
‘Binky rang me later that evening and said: “MS, is that dangerous?” which cracked me up,’ recalls Jane. ‘She rang back after Googling it and said: “I’m in tonight and I thought it might be nice if I cooked you dinner.”
‘It’s the first time in her life she had suggested that.’
Jane also had to call her partner of almost two years, Bill, a furniture maker. She says: ‘he said we have to do all the things we plan to do that we haven’t done.’
WATchING her cooing over baby Frederick, Jane looks the epitome of the glamorous granny, and there is only the odd clue there is anything wrong.
‘If I get tired, my hand trembles. If I walk too far, it feels as if my legs won’t support my body, and sometimes my eyes feel painful, but it’s not too bad when you consider I’ve had this for more than 20 years,’ she says wryly.
‘I make a point of walking 6,000 steps a day. If I get exhausted and have to sit down, it doesn’t frighten me any more. I know what’s wrong now.’
Jane remains upbeat about the future and has put her country home in Sussex on the market.
‘I don’t really fit in there,’ she says. ‘I do this TV thing which they think is terribly downmarket!
‘I feel blessed, in a way — I know what’s wrong with me. I’m going to strip out all the rubbish in my life and spend as much time as I can with these lovely grandbabies of mine.
‘In many ways, the diagnosis has been liberating.’