Long-term Follow-up of Patients With Myelopathy: A Monocentric Experience at a Specialized Center

Objective Characterize functional outcomes of patients with myelopathy/myelitis after long-term clinical follow-up. Background Neuroimmunologists play a crucial role in caring for patients with non-traumatic spinal cord disease and there is a need to better understanding the long-term clinical outcomes in this population, particularly in the context of aging. Design/Methods We performed retrospective chart review of a cohort of patients followed for more than a decade at our Myelopathy and Myelitis Center, including clinical, imaging, and biomarker information, to establish markers of functional outcomes at symptom nadir, at the first visit to our center, and after >10 years of follow-up. Results We analyzed 86 patients. Mean age at myelopathy onset was 45.2+/-12.8 years, with a mean follow-up of 159.2+/-34.1 months. Half had a monophasic course, 34% were relapsing, and 16% were progressive. Over half of patients had a demyelinating etiology, and the remainder had diagnostic categories of rheumatologic (including neurosarcoidosis), infectious, vascular, structural, or idiopathic/unknown. 53% of patients were employed full-time prior to symptom onset; at last follow-up, 19% were employed and 21% were retired. The median modified Rankin Scale (mRS) was 2 (IQR=2-3) at nadir and 2 (IQR=1-3) at last follow-up. Data regarding bowel and bladder symptoms, weakest limb strength, and gait metrics were also obtained. Conclusions Patients experience a variable course of recovery after myelopathy or myelitis. While many patients improve anecdotally, at a group level, they often remain with some degree of residual disability over a decade after their symptom nadir.