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Stiff Person Syndrome is very rare and therefore often mistaken for other conditions. Therefore, it is crucial to watch out for early signs and take proactive steps.

Stiff person syndrome is a rare neurological condition, marked by levels of stiffness and muscle spasms throughout the body, usually in the legs and lower back but often in the arms and trunk. 

According to Dr Joshi, the stiffness may eventually grow so incapacitating that it becomes uncomfortable and difficult to move. The estimated prevalence of Stiff Person Syndrome in the general population is 1-2 cases per million, with females being affected twice as often as males, regardless of race, as reported by StatPearls Publishing.

Research suggests most patients develop symptoms between the ages of 20 and 60, most commonly in their thirties and forties.

Environmental triggers such as stress, loud noises, or even the smallest touch can cause these muscle spasms, explains Dr Joshi. He adds that the condition involves an unidentified antibody that disrupts the normal signals between nerves, the brain, and the spinal cord, affecting muscle control. "Because of this, the muscles stay rigid when they should be flexible, and as the tension builds, even seemingly easy activities like standing or walking may finally become impossible."

Sometimes, small occurrences like a poor deed or just emotional tension might cause abrupt, excruciating spasms.

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According to Dr Joshi, Stiff Person Syndrome is frequently misdiagnosed due to its rarity and the fact that its symptoms can mimic those of more prevalent neurological and psychiatric disorders.

"Muscle spasms can produce stiffness, and jerkiness can make walking difficult at times. It can also mimic other neurological conditions, such as multiple sclerosis, Parkinson's disease, or spinal cord problems. When someone experiences anxiety or phobias related to walking due to spasms, this behaviour could give rise to a misdiagnosis of a psychosomatic illness or anxiety condition," he says.

He further adds that the clinical picture is further complicated by the possibility of mild or inconsistent stiffness, particularly in the early stages. "As a result, before receiving the proper diagnosis, many patients wind up seeking assistance from multiple providers for years."

When someone has stiff person syndrome, their first symptoms are often subtle and worsen with time, Dr Joshi warns. Common signs include:

• Walking may become difficult and/or uncomfortable as this infection worsens.
• Unable to go to busy or open areas

Long-term disability can be reduced or prevented with early detection.

Getting a stiff person syndrome diagnosis usually involves a combination of neurological exams, blood tests, and an electromyogram (EMG) to check muscle activity. An anti-GAD antibody test is especially important, as these antibodies can disrupt the signals between the brain and the muscles. MRI scans may also be done to rule out other conditions.

While there’s no definitive cure for stiff person syndrome, treatment focuses on relieving symptoms and helping people feel better. Some doctors may prescribe medications like IVIG (intravenous immunoglobulin) or corticosteroids to ease the immune response, while muscle relaxants, such as diazepam or baclofen, can ease stiffness, shares Dr Joish, adding that in some cases, antibody-targeting treatments may provide additional relief, and physical therapy can aid in maintaining movement and preventing complications.

With the right care, many people find their symptoms become more manageable, allowing them to live a more comfortable life.

“Because stiff person syndrome is rare, living with it can be isolating, but there is support available,” says Dr Joshi. Therefore, a neurologist with expertise in movement disorders generally oversees treatment, he adds.

Physiotherapy and occupational therapy can make a big difference by helping improve movement and make daily tasks easier. Because stress and anxiety can make symptoms feel even more overwhelming, psychological support is just as important. Often, a team that includes a neurologist, a physiotherapist, and a counsellor works together to provide holistic care, helping ease both the physical and emotional struggles that come with stiff person syndrome.

While stiff person syndrome is rare and can be difficult to diagnose, there’s hope for those living with it. With the right care, support, and a team of experts by their side, many people can ease their symptoms and enjoy a better quality of life. From medication to physical therapy and psychological support, each step makes a big difference.