Idiopathic transverse myelitis (TM) is rare, and spinal cord tissue demonstrating the pathology of idiopathic transverse myelitis is even rarer. In fact, there are no confirmed cases of human idiopathic transverse myelitis that have been published in the medical literature!
Why would someone want to look at the spinal cord tissue of someone with TM? The reason is that we don’t know what is happening in the spinal cord at the time of an attack. Researchers can stain spinal cord tissue to see many different types of immune cells that may be involved. They can also get a sense of the target of the immune response that is occurring in TM. For example, is the immune system attacking astrocytes, myelin, neurons and/or other structures?
Getting a biopsy of the spinal cord is not routinely done to make a diagnosis of idiopathic TM. However, some patients with unique cases may have undergone a biopsy to rule out a tumor or other process. If you had a biopsy done in the past, and were ultimately diagnosed with idiopathic TM, Dr. Michael Levy and his team at Johns Hopkins Medicine would like your permission to access the biopsy material and study it.
If you are among the rare TM patients who have had a biopsy, you can learn how to participate here.