Multiple sclerosis: woman loses mobility after late diagnosis

Aos 29 anos, Karen Karoline Lopes Módolo atuava como professora e gerente quando sofreu uma queda que fez com que toda a sua vida desmoronasse sobre este acidente. She was walking down the street when she tripped and fell because she couldn't lift her leg properly when walking up a sidewalk.

It was 2016 and Karen had a busy routine that made her ignore some symptoms such as tingling, numbness in her hands, legs and abdomen. Initially, she associated what she was feeling with everyday tiredness. But the fall made her seek medical help.

Apesar de ter sido diagnosticada com esclerose múltipla remitente-recorrente em 30 dias após as primeiras consultas, Karen foi diagnosticada de forma errada. O avanço do quadro fez com que a jovem perdesse parte dos movimentos e só mais tarde ela foi diagnosticada com esclerose múltipla primária progressiva.

"When I started the appropriate treatment, I already had significant sequelae and a significant loss of mobility. I started using a walker and, during this process, I progressed to a wheelchair", she reports.

Symptoms and signs
Karen, resident of Ilha Solteira, in the state of São Paulo, had previously felt a symptom that she didn't pay attention to. Em 2014, ela teve um episódio de neurite óptica, mas a visão se recuperou em poucos dias e ela não deu continuidade à investigação médica.

Two years later, she started to feel tingling sensations that she attributed to her intense routine. De acordo com o neurologista, doutor em ciências pela USP (Universidade de São Paulo) e especialista em esclerose múltipla, Mateus Boaventura, os sintomas atingem regiões do sistema nervoso central.

"Entre os principais sinais de alerta estão alterações visuais, como visão embaçada, perda visual ou visão dupla; formigamentos e dormências; fraqueza muscular; desequilíbrio; dificuldade para caminhar; fadiga intensa e persistente; além de alterações cognitivas, como dificuldade de concentração e memória", explica Boaventura.

According to him, symptoms appear in outbreaks, partially improve and then return. "Therefore, it is important that persistent or recurrent neurological symptoms are evaluated by a neurologist, especially in young adults", says the doctor.

Effects of multiple sclerosis
Karen Karoline, now 39 years old, reveals that the main effects on her body were difficulty walking, loss of balance and motor changes that directly impacted her routine and work, such as difficulty holding objects and an increasingly compromised gait.

"Quanto mais cedo ocorrer o diagnóstico e o início do tratamento, maiores são as chances de preservar qualidade de vida, autonomia e capacidade funcional", explica o neurologista Mateus Boaventura.

The disease occurs because the immune system starts attacking structures of the central nervous system, generating inflammation and neurological damage. Over time, this can result in an accumulation of disability if adequate treatment is not provided.

However, the specialist warns of changes in relation to the treatment of the disease: "therapeutic advances have allowed much more effective control of the disease, reducing outbreaks, new lesions and delaying the progression of disability."

Boaventura states that the balance for ideal treatment involves a combination of factors: early access to effective treatments, continuous medical monitoring, family and social support, as well as healthy habits.

"Atividade física regular, sono adequado, controle do estresse e uma alimentação equilibrada podem contribuir positivamente para o bem-estar geral. Mas também é fundamental que exista compreensão no ambiente de trabalho e apoio emocional".

In Karen's case, she redefined her trajectory. Today, retired due to the disease, she also studies nutrition.

Barriers to diagnosis
Despite scientific advances in medicine, Boaventura says that the main obstacles when recognizing the diagnosis is the difficulty in accessing specialized neurologists and fundamental exams, such as magnetic resonance imaging.

In addition, many initial symptoms can be confused with other clinical conditions, which ends up delaying diagnostic suspicion.

"There is also a significant inequality in access to healthcare between different social strata and between different regions of the country", says the expert. Boaventura also points out how this delay can harm the person's condition.

"The patient undergoes several treatments before reaching a specialist familiar with the disease. This delay is worrying because we now know that the time until diagnosis and the start of treatment can directly impact the evolution of multiple sclerosis", he states.

Karen also points out how humanized care and recognition of patients' pain is fundamental in the diagnostic process.

"Active listening is one of the most important tools in medicine, especially when we talk about neurological and chronic diseases, whose symptoms are not always visible in the early stages. Often, the patient arrives with sensations that are difficult to explain, which do not appear immediately during a physical examination", she reports

World Multiple Sclerosis Day
The milestone of May 30th, which reinforces World Multiple Sclerosis Day, represents the need to increase awareness about a disease that is still little known and even underdiagnosed.

"Talking about the disease helps reduce diagnostic delays, combat misinformation and encourage people with neurological symptoms to seek medical evaluation earlier", explains neurologist Boaventura.

For Karen Karoline, it is also necessary to spread more knowledge about the disease. "I believe that there is still a lot of ignorance about what it means to live with a neurological and chronic disease like multiple sclerosis. Many people associate the disease only with physical limitations, but the challenges go far beyond that."

At the same time, information and seeking help is essential so that the patient can be directed to the appropriate treatment.

"We know that early diagnosis and treatment can significantly change the trajectory of the disease. Therefore, awareness is also a form of care, adds the specialist", adds Boaventura.

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Source: CNN