Hidden MS symptoms often go undetected
A U.S. study reports that the hidden symptoms of MS are often not detected by doctors and nurses managing MS (Hoa and colleagues. CMSC 2022; MDC01). The study was reported at the Consortium of MS Clinics (CMSC) annual meeting, held June 1-4 in Maryland.
Hidden symptoms are those that are not visible – fatigue, depression, anxiety and cognitive problems – but which can have a major impact on daily life.
The study compared 1,052 report forms completed by doctors and MS patients during a visit. Doctors and patients generally agreed about the level of disease severity when MS was mild or moderate, but people with MS were more likely to recognize when their MS was severe (15% compared to 2% of doctors).
The greatest disconnect was in recognizing hidden symptoms. While 67% of people with MS said they felt low or depressed, doctors reported that only 24% were depressed. There was a similar lack of recognition for difficulty concentrating (reported by 67% of patients, 10% of doctors), mental fatigue (45% vs. 31%), and physical fatigue (54% vs. 45%).
The authors concluded that a more inclusive conversation is needed so that healthcare providers can ensure that people’s needs are being met.
Previous studies have found that when hidden symptoms go undetected, people with MS may feel “invisible” – problems are not seen and complaints are not heard (Parker and colleagues. Disabil Rehabil 2021;43:3276-3290). The problem extends to family and friends as well. When hidden symptoms are not acknowledged, it can leave a person feeling that their illness is not being validated or seen as legitimate by others.
A study published earlier this year found that 42% of people who were newly-diagnosed with MS had a moderate or severe burden of hidden disability (Glasmacher and colleagues. Mult Scler Relat Disord 2022;63:103837). Hidden symptoms appeared to stabilize in the first year of treatment with a disease-modifying therapy. The people who appeared to benefit the most were those taking Gilenya or Mavenclad although the number of people on these medications was small.
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