A mother-of-two has warned of the subtle symptom she dismissed before being hospitalised less than 24 hours later.
Lucy Wales – who was halfway through her second pregnancy – started feeling numbness and tingling in her hands and feet while at her work Christmas party in November 2023, reports news.com.au.
The Sydney mom dismissed these symptoms as pregnancy-related, but it only worsened within hours so she rushed to Sydney’s Prince of Wales emergency department the next day.
Within 12 hours, she was paralyzed from the neck down and was soon diagnosed with a rare auto-immune disease called neuromyelitis optica spectrum disorder (NMOSD), which affects the nerves in your eyes and spinal cord.
Other symptoms can include eye pain, vision problems, muscle spasms, bladder or bowel problems, sexual problems, or vomiting and hiccups. It’s diagnosed with blood tests, MRIs, and a lumbar puncture to take a sample of spinal fluid.
Lucy doesn’t know how or why she got NMOSD, but doctors point to “environmental” factors.
She said: “They just don’t know. It’s just some people are unlucky. [It can be from] stress or viruses, illness, getting sick, and getting rundown that affects your auto-immune.”
Lucy was admitted to the intensive care unit and hooked up to a breathing machine and intravenous drip, where she spent three weeks.
There’s no cure, but the condition can be managed with treatments, including high-dose steroid injections, antibodies in the blood via a drip into your vein, and plasma exchange.
The latter is something Lucy experienced, where two ports were inserted into a vein in her neck to funnel healthy plasma through her body.
She went through 40 bags of plasma over the course of five plasma exchange procedures, each lasting four hours. Eventually, she was able to feel her limbs again, successfully giving birth to her daughter, Nina, who is now 14 months old.
Reflecting on the life-saving plasma she received, Lucy said: “That generosity literally keeps me alive and keeps so many people with these rare illnesses alive, and you never meet the people who help you but those 40 people helped me.
“My life depended on that plasma and so a lot of my friends and all of my family donate regularly now.”
As there is no cure, Lucy could relapse and experience the same – or worse – symptoms again. For now, she’s thankful for the kindness of strangers, saying: “It’s a good reminder for people to donate.”
Estimates of frequency vary, but according to the OHSU Multiple Sclerosis Center, roughly 15,000 people in the U.S. have NMOSD, affecting up to 10 times more women than men and striking most often in middle age.
If you’re worried about symptoms, consult your doctor.