My long wait for a diagnosis

It took  two years before Rachael Medley, pictured at her home, was diagnosed with MS
It took two years before Rachael Medley, pictured at her home, was diagnosed with MS
  • A study has shown that many people live with multiple sclerosis for years before being diagnosed with it. Chris Bond talks to one North Yorkshire woman about her experiences.
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RACHAEL Medley remembers the moment she first noticed something might be wrong.

It was April, 2011, and the 26 year-old dance teacher from Malton, in North Yorkshire, was running one of her classes when she felt her whole left leg, from her hip to her toes, go numb. “It felt like water down the outside of my thigh,” she says.

She spoke to friends and family about what happened but didn’t think much of it – she assumed it was probably a trapped nerve and put it down to an old hip injury that she must have aggravated.

But rather than clearing up, the symptoms returned and steadily got worse. A short time later she noticed that the bottom of her right eye had turned red. Again she didn’t think it was anything particularly serious 
and presumed she was just a bit run down.

Even so she went to her GP who told her she had conjunctivitis and that she ought to go to A&E regarding the ongoing issue with her leg.

“I was passed around lots of different consultants and they did a lot of tests, but at that point I wasn’t really worried about it,” she says.

One of the specialists told her she was “fine and healthy” and sent her on her way. “He said I could go back to work, so I did.” The specialist did set up an MRI appointment for the following month but said this merely as a precaution.

However, her symptoms worsened and the numbness continued on her left side. “It was like when you’re walking through snow and you can’t feel your leg.”

At the same time she started falling over and the right side of her body weakened.

“I started losing my strength,” she says, “my arm was really weak, even brushing my hair was really difficult.”

By now Rachael had been forced to stop working. She went back to her GP and her MRI scan was brought forward. This showed a series of lesions and her consultant thought she might have cancer of the spinal cord – he said that there was a possibility of MS, but that he didn’t think this was the case.

She developed other symptoms, including fatigue, poor short term memory and weakness in her limbs, and found it increasingly frustrating that the doctor couldn’t give 
her a definite answer of what she 
had, or of when she could return to work.

“I would keep asking them when I could teach dance again and they would just say ‘maybe soon, maybe not’ – I just didn’t get any answers, and it was very difficult to plan my career, my life”.

She couldn’t exercise at the time and struggled to keep fit. She went back again to her consultant suffering from blurred vision and was finally diagnosed with relapsing remitting MS in April 2013 – two years after she first noticed the numbness in her leg.

For Rachael, an ambitious secondary school dance teacher who spent her evenings at the gym and socialising with family and friends, the news came as a big blow. “I thought I’d never work again, as teaching dance and MS don’t go together very well.”

It’s perhaps a little known fact that MS is the most common disabling condition among young adults and to begin with the diagnosis hit her hard.

“It was awful, it was really hard to accept. In my head people with MS were disabled and needed round the clock care and I didn’t feel I fitted in with that image.”

Rachael isn’t alone in facing a long, and at times anguished, wait for a diagnosis. According to the MS Society, four in five people with the disease are misdiagnosed, with a quarter told they are simply suffering from a trapped nerve. Not only that, but two-fifths are left waiting a year or more before they are diagnosed.

There are now more than 100,000 people living with the condition in the UK and 5,000 new cases are diagnosed each year. However, Michelle Mitchell, chief executive at the MS Society, says we need to identify people with the disease sooner. “Being misdiagnosed or experiencing symptoms that can’t be explained can put a considerable strain on people’s emotions and health. A fast, accurate diagnosis enables people to take steps to begin to manage their condition, access treatment and take greater control of their lives again.”

She accepts it’s a difficult situation for consultants and neurologists on the frontline, but says patients have to come first.

“While we are aware that MS is a complex condition that isn’t easy to diagnose, we don’t want thousands of people to be left in ‘limbo’ suffering needlessly. It’s important for GPs to recognise the warning signs and refer people promptly to a consultant neurologist who can then make an accurate diagnosis.”

Professor Alan Thompson, a consultant neurologist and director of the UCL Institute of Neurology, says part of the problem is a lack of understanding of MS. “I’ve seen a lot of people in my clinic who have never heard of MS so it doesn’t surprise me that one in three people in the survey say they didn’t know what it was before diagnosis.

“Early symptoms of MS can fluctuate and can be attributed to a number of other things, which is why awareness of the condition is so crucial – both for GP’s and the general public.

“We’ve moved on so much in terms of the treatments that are available to reduce relapses and help manage symptoms, so a prompt and accurate diagnosis of MS can make an enormous difference. It is only once someone is diagnosed that they can begin to understand and manage their condition.”

For Rachael, and all those who find themselves in a similar situation, having a diagnosis is crucial. Throughout her two-year ordeal she underwent a string of tests and while it was frustrating at times, she doesn’t blame health professionals for not pinpointing the disease sooner.

“Everyone’s symptoms are different so getting the correct diagnosis is the most important thing because getting the wrong diagnosis would be just as devastating.”

But she hopes that something can be done so that in the future others don’t have to wait as long as she did. “I understand that they need to be thorough and absolutely certain that they’re correct, but I wish there was a way of speeding it up – things like regular MRI scans would definitely be a big help.”

Rachael is now 30 and actually having a diagnosis, even one as life-changing as this, means she’s able to understand her condition and, thanks to new and improving drugs, is better equipped to manage it. “I know what it is and I know how to deal with it when it flares up,” she says.

She’s now working part time in a local school in a support role and 
hopes to teach dance again. “It’s not easy, but I’m doing really well and 
there are still lots of things I want to do in the future.”