When my mom was in her early forties she was diagnosed with Systemic Lupus and Sjogren’s disease. She was followed by a rheumatologist and given medications for supportive care when her Sjogren’s (which always seemed more active) flared.
Then one morning, in early January, she began to notice tightening (she described them as rods in the back of her neck) and numbness/banding around her abdomen. Since this was occurring over the weekend, she “let it go,” thinking she pinched in a nerve in her neck. Neck pain was not uncommon for her, but this type of pain and numbness just wasn’t going away…and was only getting worse. By Monday, three days after her first onset of symptoms, she went to the ER, where they recommended her to go to her primary care physician who made her an appointment with her neurologist for the next day.
She called me in tears, and I promptly told her to go to the neurologist’s office and explain the situation. She did, and was admitted to the hospital that night. She had all the tests for Neuromyelitis optica done within 24 hours.
Neuromyelitis optica (NMO), also called Devic’s disease, is a central nervous system disorder causing primarily swelling and inflammation of the eye nerves (optic neuritis) and the spinal cord (myelitis).
She was started on treatment (high dose steroids) as soon as the MRI results came back that she had a large lesion on her cervical spine. The spinal tap results took longer to come back, but confirmed the results…she definitely has NMO, putting her in a high risk category for recurrent attacks. She is now on a taper of steroids, with her lesion shrinking, immune-suppressant medication and is keeping up with both physical and occupational therapies. If she listened to the ER doctor, my mother would have been paralyzed or worse… Know your body, be your own advocate. That is why she is doing so well, even when she is having a “not so good day.”