Abstract
Objective: To describe the characteristics and outcome of patient-reported dysesthetic sensory symptoms known as the “MS hug” in people with multiple sclerosis (MS).
Background: The term “MS hug” is widely recognized by people with MS and lay information is readily available through electronic resources. However, there is no medical definition of the “MS hug” and no published information about how the term is used by people with MS.
Design/Methods: Retrospective medical record review. Spontaneously reported “MS hug” symptoms were evaluated in conjunction with neurologic history, medical and neurology examination, MRI results, and other medical diagnoses. The “MS hug” was defined as a unilateral or bilateral segmental constricting (squeezing, band-like, or girdle-like) sensation involving the thorax, abdomen, or both that was associated with objective evidence of a neuroanatomically-appropriate current or prior spinal cord lesion and not attributable to another cause.
Results: Of 116 people with MS (71% female; 76% relapsing disease) reporting the “MS hug”, 46 (41%) met the study definition. The onset of symptoms occurred during cord relapse evolution (41%), during early recovery (20%), or more than 3 months post-relapse or during the progressive phase (39%). Delayed-onset symptoms usually persisted and required treatment. Of the 70 patients whose symptoms did not meet the study definition, 27 had other types of neuropathic pain without a constricting sensation and 11 had no clear etiology. However, 32 (46%) had a clear alternative cause, most commonly musculoskeletal discomfort, GERD, anxiety, and bowel symptoms. Serious alternative causes requiring immediate intervention included herpes zoster (n=3), myocardial infarction, pulmonary embolism, and cholecystitis (n=1 each).
Conclusions: The “MS hug” pattern of myelopathic sensory discomfort can develop during acute or chronic stages of MS-related cord injury. However, people with MS commonly misattribute symptoms, including those of serious medical conditions, to the “MS hug”. Patient and physician education are needed to avoid this error.
Disclosure: Dr. Wingerchuk has received personal compensation from MedImmune, Celgene, and Novartis. Dr. Wingerchuk has received personal compensation in an editorial capacity as co-Editor-in-Chief for The Neurologist. Dr. Wingerchuk has received research support from Alexion and TerumoBCT. Dr. Valencia Sanchez has nothing to disclose. Dr. Carter has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Alder Pharmaceuticals. Dr. Carter has received research support from MedDay Pharmaceuticals, Roche Pharmaceuticals.
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