All patients with multiple sclerosis (MS) may soon be asked to fill out a monthly survey to help doctors spot which of them will end up with a severe form of the disease.
The recommendation comes after a study found MS sufferers who reported frequent immobility and pain in the first five years after diagnosis were more likely to see their condition progress and require aggressive treatments.
By picking out these cases early, doctors will be able to give medication that could help delay problems, giving patients more time when they are healthy. And those identified as low-risk can be spared intensive treatments that are sometimes given ‘just in case’.
The online questionnaire, called the MS Register, is currently in use only for research purposes. More than 17,000 MS patients in the UK use it to keep track of their illness.
But researchers say if used in NHS practice – with patients asked to fill out the form once a month online – it could revolutionise the treatment of the incurable disease.
One patient who has already benefitted from the Multiple Sclerosis Register is Dominic Shadbolt, 54, from Oxford who began taking part in 2018. Pictured with his wife Claire
‘Some patients can go decades without needing treatment while others progress in just a few years,’ says Dr Richard Nicholas, a neurologist at Imperial College London and co-author of the study. ‘Doctors haven’t been able to say who will progress quickly and who won’t. Our findings would change this.’
More than 130,000 people in the UK suffer from MS. It develops when the immune system goes haywire and attacks the protective coating on brain and spinal cord nerves, known as the myelin sheath.
This leads to symptoms such as poor mobility and numb limbs, as well as mental health problems. There are several forms of MS. About 85 per cent of patients go months without symptoms but suddenly fall ill – known as relapsing-remitting MS. Many will progress to another more severe form of the disease known as secondary progressive MS.
Some 15 per cent are diagnosed with the severe form to begin with, called primary progressive MS, when the condition does not remit and gets steadily worse.
Treatments on the NHS currently include medicines known as disease-modifying therapies – which can cut episodes of ill health in relapsing-remitting MS by about 50 per cent – and stem cell transplants, where the immune system is ‘reset’ by killing off defective immune cells using chemotherapy. Studies show that, when given early, this can delay the progression of MS by up to 15 years.
But both treatments have side-effects. Stem cell transplants carry an increased risk of cancer, early menopause and fertility problems.
‘Treatments like stem cell transplants are very intensive,’ says Dr Nicholas. ‘If we knew you’d be fine without treatment, we could say go enjoy your life and we’ll think about treatment in five years. That would make a huge difference to patients.’
In the new study, published in journal Brain Communications, researchers examined data from the MS Register, which has been running since 2011. The first-of-its-kind register, funded by the charity MS Society, tracks the long-term health of MS patients. Patients log their symptoms and the severity of their disability each month.
Questions include: ‘How easy do you find it getting to the toilet?’ or ‘How is your walking?’. They are also asked about their mental health and take memory tests, as MS can impact cognitive function.
The online questionnaire, called the MS Register, is currently in use only for research purposes. More than 17,000 MS patients in the UK use it to keep track of their illness
Researchers found that recently diagnosed MS patients who showed early signs of disability were more likely to get secondary progressive MS. They also found that patients who had few early symptoms were much less likely to progress.
‘In hospital, we can’t regularly test patients, so it’s hard for clinicians to spot small changes in their symptoms,’ says Annalaura Lerede, an MS researcher at Imperial College London and co-author of the study.
‘Our findings show that online tools like the MS Register can potentially spot which patients need urgent treatment.’
Dominic Shadbolt, 54, has taken part in the register since 2018. The retired police officer from Oxford was diagnosed in 1994 and has suffered relapses that have impacted his speech and eyesight.
Dominic, who now runs a YouTube channel about the disease called The MS Guide, says the MS Register has allowed him to keep track of his changing symptoms.
‘You can see if your condition has improved or worsened over time and it also helps to inform your doctor,’ he says. ‘You only get 20 minutes with a neurologist, so it’s important you get to the point. I can show my doctor my scores on the register and he can decide based on this what treatment to give me.
‘Doctors and nurses should make sure all MS patients sign up. Your data is going towards helping other patients. It’s possible that it might help find a cure in the future.’
To find out more about the MS Register, visit ukmsregister.org