Invisible Symptoms of MS
One of the most personally influential articles I have read on MS was published in The Journal of Neuroscience Nursing in 2008, titled, “Invisible and Visible Symptoms of Multiple Sclerosis: Which are More Predictive of Health Distress?”
The authors of this study surveyed 145 patients with MS to determine whether they were distressed more by visible or invisible symptoms of MS. According to the article, “Visible symptoms include the use of assistive devices, problems with balance, and speech difficulties, while invisible symptoms include fatigue, pain, depression, and anxiety.”
The study found that the large majority of complaints of “health distress” were due to invisible symptoms. The authors state that, “The invisible symptoms of pain and depression were the most significant predictors of distress.”
Classically, MS has been considered a disease largely without pain. After all, the brain itself has no sensory receptors, (in fact, many neurosurgical procedures are performed on patients without sedation). So why should pain be a prominent symptom in patients with MS? Additionally, though it is not at all surprising that patients with MS might suffer from depression (depression is common in many people without MS, of course), does the distress caused by depression really outweigh the distress caused by trouble walking? Well, it seems this is the case.
The results surprised me at the time, but I doubt they would surprise too many of my patients with MS. I have met many patients whose level of suffering is out of proportion with their visible disabilities. It is a challenge to remind myself that in such patients my eyes and neurological exams can fail to detect what bothers patients them most. I know that patients are frustrated by this as well. They are understandably troubled when other people tell them that they look so well, when in fact they might feel quite terrible.
I hope that the lessons of the study become more fully understood by anyone involved in treating MS, and indeed anyone who knows or cares for someone with the disease. Yet, I understand this is a tall order. After all, it is very easy to measure how quickly someone can walk 25 feet, or see if someone is walking with a cane or not. In contrast, it is very difficult to measure and understand someone else’s depression and pain. Nonetheless, doctors need to remember that our patients’ most distressing symptoms might be those we never see.