When a celebrity comes forward to publicly reveal a health problem, there is increased awareness of the medical condition almost instantly. That’s especially true if the condition was previously unfamiliar to most. On December 17, 2013, actress Kristen Johnston posted on Facebook that has been diagnosed with lupus myelitis. That is, after consulting 17 doctors, months of tests, and a leave of absence from work. She is most famous for her role in the television series 3rd Rock From the Sun.
While most people have at least heard of lupus, not many know about lupus myelitis. Because of similar names, lupus myelitis is sometimes confused with lupus nephritis.
According to the Lupus Research Institute, lupus myelitis is a form of transverse myelitis (a neurological disorder caused by inflammation of the spinal cord). Transverse myelitis implies that the inflammation occurs across both sides of the affected level of the spinal cord. The cause is not fully understood but inflammation can develop following viral infections and abnormal immune reactions (e.g., autoimmune). When myelitis is associated with lupus, the autoimmune condition targets the spinal cord.
The spinal cord carries motor nerve fibers to our limbs and it carries sensory nerve fibers from the body to the brain. If nerves in the cervical region of the spinal cord are involved, the neck, arm, hands, and breathing muscles may be affected. If nerves in the thoracic region are involved, the torso and parts of the arm may be affected. Lumbar nerves control signals to the hips and legs. Sacral nerves control signals to the groin, toes, and parts of the legs. Damage at one segment of the spine can affect that level as well as the levels below it on the spine.
Symptoms of lupus myelitis can vary greatly, but typically involve some degree of paralysis or weakness, ranging from difficulty with movement of one limb to quadriplegia. Depending on the level of the spinal cord affected, there can be urinary, bladder or bowel dysfunction, muscle spasms, headache, fever, loss of appetite, respiratory issues, heightened sensitivity to touch, numbness, or tingling. In one-third to one-half of patients, pain is the primary symptom—usually involving the lower back, legs, arms, or torso.
Half of lupus myelitis cases are related to antiphospholipid antibodies and the other half is due to active vasculitis, according to the Lupus Research Institute. Antiphospholipid antibodies are antibodies directed against proteins in the blood with the result being excessive clotting of the blood. Vasculitis is a condition that is characterized by inflammation of the blood vessels—veins, arteries, and capillaries.
Initial symptoms of lupus myelitis can develop over hours or over days. Corticosteroid medication is typically used to control inflammation. During the 4th to the 21st day following symptom onset, the neurologic function typically declines. Within 10 days of symptom onset, most patients have lost the maximum neurological function.
Recovery from transverse myelitis usually starts 2 to 12 weeks after symptom onset but may take 2 years or longer. If there is no improvement in the first 3 to 6 months, complete recovery is not likely. If there is an underlying condition, as is the case with lupus myelitis, lupus must be managed in an effort to prevent relapse of lupus myelitis.