All patients diagnosed with multiple sclerosis (MS) may soon be required to complete a monthly survey in order to assist doctors in identifying those who may develop a severe form of the disease. This recommendation stems from a study indicating that MS patients who experience frequent immobility and pain within the first five years of diagnosis are more likely to see their condition progress and require aggressive treatments.
By identifying these cases early on, doctors can administer medication that may help delay the progression of the disease, granting patients more time in a healthy state. Additionally, individuals identified as low-risk can be spared intensive treatments that are sometimes unnecessarily given.
Currently, an online questionnaire called the MS Register is in use for research purposes only, with over 17,000 MS patients in the UK utilizing it to monitor their illness. However, researchers suggest that if implemented in NHS practices, patients could complete the form once a month online, potentially revolutionizing the treatment of this 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
Dr. Richard Nicholas, a neurologist at Imperial College London and co-author of the study, explains, “Some patients can go decades without needing treatment while others progress in just a few years. Doctors haven’t been able to say who will progress quickly and who won’t. Our findings would change this.”
In the UK, more than 130,000 people are affected by MS, a condition that develops when the immune system wrongly attacks the protective coating on brain and spinal cord nerves, known as the myelin sheath. This causes symptoms such as poor mobility, numbness in the limbs, and mental health issues. MS presents in different forms, with approximately 85% of patients experiencing periods without symptoms followed by sudden illness, known as relapsing-remitting MS. Many of these individuals eventually progress to a more severe form of the disease called secondary progressive MS.
On the other hand, 15% of MS patients are initially diagnosed with the severe form known as primary progressive MS, which does not remit and worsens over time.
The current treatments available on the NHS include disease-modifying therapies, which can reduce episodes of ill health in relapsing-remitting MS by about 50%, as well as stem cell transplants that reset the immune system through chemotherapy, potentially delaying the progression of MS by up to 15 years if administered early. However, both treatments come with side effects, with stem cell transplants carrying a higher risk of cancer, early menopause, and fertility issues.
Dr. Nicholas emphasizes the potential impact of identifying patients who don’t require treatment: “Treatments like stem cell transplants are very intensive. 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.”
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
In their recent study published in the journal Brain Communications, researchers analyzed data from the MS Register, which has been operational since 2011. The register, funded by the charity MS Society, is the first of its kind and tracks the long-term health of MS patients. Participants record their symptoms and the severity of their disability each month.
The questionnaire includes questions such as “How easy do you find it getting to the toilet?” and “How is your walking?” Patients are also assessed on their mental health and undergo memory tests, as MS can impact cognitive function.
The study revealed that recently diagnosed MS patients showing early signs of disability were more likely to develop secondary progressive MS. Conversely, patients with few early symptoms were less likely to experience progression.
Annalaura Lerede, an MS researcher at Imperial College London and co-author of the study, explains, “In hospital settings, it’s challenging for clinicians to regularly assess patients, making it difficult to detect subtle changes in their symptoms. Our findings demonstrate that online tools like the MS Register have the potential to identify patients in urgent need of treatment.”
Dominic Shadbolt, a 54-year-old retired police officer from Oxford who has been participating in the register since 2018, has already benefited from its use. Diagnosed with MS in 1994, Dominic has experienced relapses affecting his speech and eyesight. The MS Register has allowed him to monitor his changing symptoms effectively.
Dominic explains, “The register not only enables you to track improvements or worsening of your condition over time, but it also helps inform your doctor. During a mere 20-minute appointment with a neurologist, it’s crucial to get to the point. I can show my doctor my scores on the register, allowing him to make treatment decisions based on this information.
“Doctors and nurses should ensure that all MS patients sign up. Your data contributes to helping other patients, and it may even assist in finding a cure in the future.”
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