Paula Barreras Cortes, MD
Johns Hopkins Transverse Myelitis Center, Baltimore, MD
Many patients struggle through the initial evaluation before receiving a transverse myelitis (TM) diagnosis. A primary focus of the TM Center at Johns Hopkins University School of Medicine (JHTMC) is to facilitate a precise diagnosis and treatment for TM. It is not infrequent that some patients are initially misdiagnosed and treated for conditions that they don’t have. Many patients are given diagnoses, such as Multiple Sclerosis, Guillain-Barré syndrome (GBS) or even psychogenic problems before reaching a final diagnosis of TM.
Some of these issues are caused by a lack of understanding among some doctors in the community about TM and the diagnostic approaches required for patients who are experiencing symptoms suggestive of this disorder. This problem is further complicated when patients are dismissed and sent home from emergency departments or when patients need multiple visits or even multiple hospital admissions before obtaining a final diagnosis. Additional delays are created when patients are forced to find practitioners familiar with TM. All of these complications and delays ultimately postpone the correct treatments, almost all of which should be administered as quickly as possible.
One of the most important missions of the JHTMC is to identify better ways to improve the diagnosis of TM and to disseminate the strategies that would help doctors make a proper diagnosis from the very beginning. We have focused on studying the factors that may influence misdiagnosis and erroneous treatment. We are also interested in the identification of the factors that influence relapses and the outcomes of the disorder.
In one of our recent studies, we analyzed more than 500 clinical records from patients referred to the JHTMC for evaluation of TM. In our study, we found that nearly 40% of the patients were erroneously diagnosed as TM when they really had other problems, such as strokes, herniated disks, tumors and metabolic problems that affected the spinal cord. Not surprisingly, a high percentage of the patients that were properly diagnosed were also initially misdiagnosed as GBS or other neurological disorders. These findings immediately point out a lack of understanding of TM and a lack of understanding of the disorders that present with similar symptoms to TM but are not TM. As part of our study, we analyzed the presentation pattern of TM. By combining clinical information, the time-frame of clinical presentation, the findings of imaging of the spinal cord by magnetic resonance imaging and the results of the cerebrospinal fluid, we have been able to identify clinical profiles that facilitate an approach to achieve an accurate diagnosis of TM and differentiate TM from other disorders that may mimic TM. When looking at the factors that best predicted who really had TM versus other diagnoses, two things came up as the most important ones: the temporal profile of symptom presentation and the features of the first MRI of the spinal cord. The time from the onset to the peak of symptoms correlated with the diagnosis, as most strokes of the spinal cord occurred very fast (i.e., in a couple of hours), while the truly inflammatory problems took several hours to days to establish. The localization of the lesion in the MRI was also very helpful: the strokes of the spinal cord were more frequently located in the anterior part of the cord and were longer than the myelitis lesions.
We hope this information is useful to doctors in the community and for our patients to help with a proper diagnosis. If we are able to avoid confusion between a diagnosis of TM and other problems of the spinal cord, we can avoid unnecessary and potentially harmful treatments, while offering the proper treatments as quickly as possible.