Anne, a 50-year-old trial lawyer from Cincinnati, always had a sharp mind: first in class, full scholarships at school, and now a partner in a top firm. But then, her hands started to shake.
Worried, Anne saw a neurologist at the Cleveland Clinic. Her CT and MRI scans came back normal, and she was diagnosed with a progressive but non-fatal disease called “essential tremor disorder”. Eventually, however, her condition became worse. She started to forget things and could not comprehend even simple sentences. Her husband said that she would just sit and zone out. It was as if her brain was slowly being switched off.
And then, the seizures began.
When she went into a 2-day coma after a seizure and the scans came back normal, even doctors at the Cleveland Clinic questioned their initial diagnosis of stroke. Finally, Anne’s husband pulled some strings to see Dr. Robert Brown, a neurologist specializing in treating stroke. He was their last hope to battle this unknown illness.
By the time Anne was able to see Dr. Brown, she was in critical condition, even unable to eat herself. She had been told that she did not have long to live, and a priest came to give her the last rites.
An Overlooked Detail
As Dr. Brown desperately tried to find the cause of Anne’s plight, he revisited her tests and found a detail previously missed: the antibody levels in Anne’s blood and spinal cord fluid were extremely high, a sign of her body having an autoimmune response.
“Her MRI scan was essentially normal, but there were these various signs of autoimmunity, So we started with steroid therapy, which led to a rather striking improvement.”– Dr. Brown
Within a month of this treatment, Anne started recovering. Her memory improved, she was able to respond, and her tremors started to disappear. Several doses later, she was back to walking, talking, and eating herself. While steroid treatment helped, Anne eventually had to receive IV immunoglobulins from donors to counteract her overactive antibodies. Finally, she was well enough to go back to work.
Of these two years, Anne remembers very little:
“There are large gaps of it missing,” she says. “It’s like that whole couple of years are gone, or are very fragmented in my mind.” “People who meet me today think I’m your average working attorney,” she says. “They have no idea. It’s a truly miraculous story. I literally went from having one foot in the grave to being totally fine again.”-Anne
Autoimmune Dementia: A Rare Condition
So what happened?
Anne had suffered from a rare condition few neurologists knew about: autoimmune dementia. While autoimmune dementia shares symptoms with more common types of dementia-memory loss and confusion- the fact that it is curable sets it apart.
Like other autoimmune diseases, this dementia occurs as a result of an overactive immune response to stress or infection, when antibodies bind to neurons instead of their own receptors. It is also curable, like other autoimmune disorders: with steroids.
The treatable nature of this disease makes identifying those that have autoimmune dementia important. While this has proved difficult, clinics in the UK and Spain are working on developing diagnostic tests.