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Journalism of Courage
Twenty seven-year-old Lovika had never imagined that one fine morning she would not get off her bed and slide to the floor in a heap instead. Or that the numbness and weakness in her muscles and the tingle at her extremities meant that she was developing a rare and severe neurological disorder that would keep her confined to her bed and hospital visits for six months.
Diagnosed with Hyper-acute AMAN Guillain-Barré syndrome and having taken almost half a year (she was diagnosed last November) to get back her moorings, she has now resumed her normal life thanks to a multi-disciplinary treatment approach to her problem. “I was unable to feel both my legs when I fell down. My husband rushed me to a nearby hospital where my blood samples were collected. The next morning my hands too became numb. The doctors said that it was probably a temporary nerve problem and that I should give it time. However, things did not improve. So, we decided to get a re-assessment done at Indraprastha Apollo Hospitals, Delhi,” says Lovika, who lives in Karnal.
That’s when she was diagnosed with a rare kind of Guillain-Barré syndrome, which is caused by a problem in the immune system, the body’s natural defence against illness and infection. Usually, the immune system fights back any alien bacteria or virus when they attack your body. But in people with Guillain-Barré syndrome, the same immune system malfunctions and mistakenly attacks and damages the nervous system with symptoms manifesting mostly in the peripheral nerves. Usually, many patients report symptoms after an infection of some kind in the body.
In Delhi, Dr PN Renjen, Senior Consultant, Neurology, Indraprastha Apollo Hospitals, and Dr Dinesh Chaudhari, Consultant, Neurology, took up her case. An MRI of the cervical spine , a nerve conduction velocity test and a CSF test revealed that she was suffering from hyper acute Acute motor axonal neuropathy (AMAN) variant of Guillain-Barré syndrome (GBS). This means that axons of motor nerve cells are selectively targeted and destroyed by the body’s own immune system. This has been usually seen in patients who have had a bad bout of flu, which impairs their motor functions and sensory responses.
Says Dr PN Renjen, Senior Consultant, Neurology, Indraprastha Apollo Hospitals, “This was an extremely challenging case as the patient’s condition was deteriorating fast due to the severity of her condition. The treatment of Guillain-Barré syndrome requires a comprehensive and multidisciplinary approach. The patient had shown signs of progressive ascending paralysis and required immediate assistance. We were prompt in initiating supportive care, including IVIG or plasmapheresis, to mitigate nerve damage and accelerate recovery. Since there is no cure as such but management of the condition itself, we had to arrest damage and get her back on her feet. The longer the damage, the longer the process of physiotherapy in recovery.”
Lovika had developed progressive ascending paralysis with muscle weakness affecting both sides of the body. She also developed facial palsy and bulbar weakness with mild difficulty in speech and breath.
The doctors put her on intravenous immunoglobulin (IVIG) therapy within a few hours of her showing up at the emergency room. This involves injecting healthy antibodies pooled from donated blood and a biological agent used to manage immunodeficiency, autoimmune, infectious and inflammatory states. Then there is plasmapheresis or plasma exchange, which involves being attached to a machine that removes blood from a vein and filters out harmful antibodies that are attacking your nerves before returning the blood to your body, Through all this, she was given respiratory support.
Once she had stabilised, Dr Renjen put her on an intense protocol of rehabilitation and physical therapy to restore functionality and minimise long-term disability. “Additionally, pain management strategies and symptomatic relief help improve the patient’s overall quality of life. By combining these various treatment modalities, healthcare professionals can optimise outcomes, enhance patient comfort, and support the recovery process for individuals with Guillain-Barré syndrome,” says he.
It has taken six months six months for Lovika to become normal but she has learnt to value her life. “I still do not know how the disease came about. But I was pulled back in time, value my life more and maintain a healthy lifestyle. I am currently on calcium tablets as well as blood thinning medicines and also go for regular physiotherapy,” she says.
