Mysterious Madness, Rare disease, now treatable in PGIMER and in AIIMS
Reading Time: 3 minutes

Doctors thought patient was psychotic, but her body was attacking her brain

A Unique story was been shared in BRAINSTROM 2019 conference of PGIMER Neurology Department. This story is about MYSTERIOUS MADNESS. An Underdiagnosed disease which now has diagnosis and treatment. But the outcome and symptoms of this disease is quite horrifying.

Dr Rohit Bhatia, Neurologist, AIIMS

Confused with psychiatry, these patients suffered mysterious madness because their behaviour changes occur not in months but in weeks rather in days. Behaviour changes are so bizarre that attendant to patient could not get it. It is so drastic that even doctors too get confused it with psychiatry. It used to be a mystery earlier now it has a name and treatment both. It is AutoImmune Encephalitis said Dr (Prof) Rohit Bhatia, Neurologist, AIIMS, Delhi.

Here’s the story of Patient

Shikha (Name Changed) was convinced that a nearby truck was following her. Someone was after her. She was a teacher in Chandigarh based Private School and in November 2018 when the “bizarre” behavior began, said her father, Prabhat. Her parents noticed that she had been rambling, not making any sense. At one point, she called her family and friends to warn them: Something terrible was going to happen to all of them.

“Shikha was like a different person. We didn’t know who she was,” Prabhat Sharma said. “We had gone from having this daughter who was perfectly normal, happy, vibrant … with a bright future ahead.” All of a sudden, this all came crashing down.”Then, one day, she disappeared. “We didn’t know where she was for more than 24 hours,” her father said. She had gotten in her car and driven from Chandigarh to Lucknow with no money. She went right through toll booths without paying. But she eventually found her way back to her grandparents’ house, still convinced that she was being followed.

Her grandfather peered out the window, looking for something suspicious. But they soon realized there was no one after her.”I get emotional when I think about it,” said Shikha’s grandfather Anil Shukla. Her parents showed up and took her to the hospital.

Doctors initially thought Shikha had a mental illness. She spent time in different psychiatric facilities, which made her family uneasy. One in particular reminded her father of the movie “One Flew Over the Cuckoo’s Nest.” “They just kept trying medication after medication after medication, and none of it worked,” Prabhat Sharma said while sharing with media4pilar.com. Things kept getting worse. There was some numbness in her face and hands, and she would develop seizures. Doctors went looking for something that might be wrong with her brain — a tumor, perhaps — but found none. She was misdiagnosed with multiple sclerosis but continued to decline. Later we approached PGIMER and got to know it is Autoimmune Encephalitis–A rare disease in which her own cells are killing her brain.

The key to making the right diagnosis is a simple test on the blood or spinal fluid, Dr Manish Modi, Neurologist, PGIMER said. You just have to know what you’re looking for: a type of antibody. To fight off disease, the immune system makes antibodies, Y-shaped proteins that attack foreign invaders like bacteria or viruses. But sometimes, those proteins can attack our own bodies. This is known as autoimmune disease.

As per Dr Bhatia, there are over 15 known types of autoimmune encephalitis. Meaning the immune system can attack other brain receptors, too.Dr Rohit Bhatia, believes that we should be testing for autoimmune encephalitis more routinely. After Shikha like cases, he learned about and wondered how many of her own patients might have it.”It seemed to me a very simple, straightforward thing just to test the people in my service using the same blood test,” he said. But it is not that simple, it quite complex but yes we now have treatment. If incase diagnosis is missed, this disease is so vigorous that it could be fatal to patient within weeks of its onset.

This disease was earlier underdiagnosed but now could be diagnosed and treated as well. We have drugs too treat this mysterious disease and PGIMER is creating literature on this too sad Dr Professor Vivek Lal, Neurology, PGIMER.

“Recovery is a very complicated, one-step-forward, two-steps-back process,” said Shikha, who could not read, write or walk when she was released from the hospital in 2019 March.

Recommend to friends
  • gplus
  • pinterest

About the Author

Taruni Gandhi

Taruni Gandhi is an ace writer and journalist with over a decade experience in covering health, social issues. She can be contacted at taru.gandhi@gmail.com.

Leave a comment