'I couldn't feel anything': how Nadine Dondelinger lives with multiple sclerosis

For Nadine Dondelinger, a Luxembourg resident, the road to diagnosis began in 2021 with a disturbing discovery: she stopped feeling touch in her abdominal area. "I ran my hand over my skin - and I felt nothing," she recalls in an interview with RTL Télé, timed to coincide with World Multiple Sclerosis Day (30 May). The diagnosis was shocking, but it also explained what had been happening to her for years: the tingling in her fingers, which she had ignored for almost a decade, turned out to be an early symptom.

At first, Nadine feared the worst - imagining how quickly she would end up in a wheelchair. But after studying the literature and consulting with doctors, she learnt that the disease can develop in unpredictable ways, and does not always lead to severe disability. This realisation was a turning point for her and her family.

Today, Nadine continues to work full-time in the office, but pays for it with fatigue: there is no energy left for hobbies and personal life. Her daily difficulties centre around fatigue, balance and mobility problems. Climbing stairs is possible, but requires all her strength. Descending is dangerous without a handrail: balance fails, concentration is at an all-time low. In addition, MS makes her overly sensitive to temperature: the heat in summer effectively locks her in her home, preventing her from travelling to warm countries.

One of the most frightening symptoms at the beginning of the disease was the so-called phantom corset - the feeling that my chest was being squeezed by a nonexistent tourniquet, making it difficult to breathe. Fortunately, over time, this sensation went away. Nadine's treatment now includes courses of intravenous cortisone and regular physiotherapy every fortnight to maintain mobility and reduce the risk of new attacks.

The causes of Multiple Sclerosis (MS) are still not completely clear. What is known is that it is an autoimmune disease in which the body attacks its own central nervous system. Risk factors include genetics, viral infections and the environment, but why some people get the disease and others don't, medicine still can't say for sure.

As CHL neurologist Dr Cescutti explains, multiple sclerosis in Luxembourg affects between 1 and 2 people per 1,000 inhabitants, and cases are becoming more frequent. Women are three times more likely to be affected, but men tend to have a more severe disease.

A major misconception patients face is the belief that MS necessarily leads to disability. But, as Dr Cescutti emphasises, most patients never need a wheelchair. The disease often runs as an "invisible disability" - symptoms can be significant but outwardly unnoticeable.

Today, modern therapies can slow the progression of the disease and prevent new outbreaks. There is no complete cure yet, but patients have a chance to preserve their quality of life - provided they are diagnosed early, informed and take a comprehensive approach.