Case Narrative: Post-Polio Syndrome After 73 Years of Misdiagnosis

By SWA

Patient History

The patient is a 76-year-old female with a lifelong history of progressive skeletal muscle weakness, first noted following a febrile illness at age six. The illness lasted over three weeks and was initially diagnosed as influenza by her primary physician, though a consulting doctor expressed concern that it may have been more serious. No further investigations were conducted at that time.

Post-illness, the patient developed persistent fatigue in the lower limbs, difficulty climbing stairs, lifting objects, restricted range of motion, and poor exercise tolerance. By early school age, she required assistance to climb stairs and, by age eight, was unable to walk 700 meters without rest due to lower limb weakness and paresthesias.

Psychosocial Context

Despite clear functional impairments, the patient received no medical explanation for her symptoms throughout childhood. Family members and healthcare providers attributed her condition to deconditioning, encouraging increased exercise and often framing her limitations as laziness. She recalls being mocked for having cold extremities and for needing extra clothing, even in warm weather.

This longstanding minimization of symptoms led to internalized feelings of inadequacy. She avoided physically demanding jobs and recalls her first pregnancy, at age 20, as a period of severe decline in mobility.

Diagnostic Workup (2008–2022)

  • 2008 (USA): Diagnosed with Chiari I Malformation. Considered a potential contributor to symptoms, but did not fully explain clinical presentation.

  • 2010 (Genetic Testing): Identified an ACTN3 single nucleotide polymorphism, associated with altered muscle performance. Considered a contributing but not causative factor.

  • 2016 (UNMH, USA): Diagnosed with myalgia.

  • 2019 (Germany): During the COVID-19 pandemic, worsening muscle weakness was misattributed to bilateral scapular ganglion cysts.

  • July 2022 (Germany): EMG excluded myasthenia gravis. Clinical notes described:

    “The patient is extremely sensitive to pain, screams loudly with almost every needle movement, but does not abort the examination despite repeated reminders that she can stop the procedure at any time.”

    No conclusive explanation for her progressive weakness was offered.

Clinical Consideration: Pain Sensitivity During EMG

The patient's marked pain sensitivity during needle electromyography raises the possibility of an inflammatory myopathy such as myositis, where muscle inflammation and central sensitization may result in:

  • Inflammation: Inflamed muscle tissue is more reactive to mechanical stimuli.

  • Muscle Tenderness: Chronic inflammation may cause persistent muscle soreness, exacerbating pain during EMG.

  • Central Sensitization: Prolonged nociceptive input may lower the threshold for pain, resulting in exaggerated responses.

Such responses should prompt clinicians to consider underlying neuromuscular conditions and adjust EMG techniques accordingly, including minimizing needle repositioning and avoiding hypersensitive areas.

Clinical Features (Progressive Course)

  • Musculoskeletal: Chronic weakness in both upper and lower extremities, worsened by exertion (e.g., climbing stairs, lifting, walking uphill). Inability to ride a bicycle due to trunk and pelvic instability.

  • Respiratory: Intermittent dyspnea, occasionally accompanied by chest pressure.

  • Neurological: No EMG evidence of myasthenia gravis. Notable pain sensitivity during diagnostic procedures.

Final Diagnosis

In 2022, following consultation with Dr. Shaw (UK), the patient was diagnosed with Post-Polio Syndrome (PPS). This diagnosis accounts for the febrile illness in early childhood, the chronic and progressive muscle weakness, and associated functional decline over subsequent decades.

Current Status and Challenges

Although the PPS diagnosis has provided long-awaited clarity, the condition remains underrecognized in Germany. The patient faces ongoing barriers to specialized care, rehabilitation, and social support due to limited clinical awareness and systemic underdiagnosis of PPS.

Discussion

This case exemplifies the long-term consequences of missed or delayed recognition of childhood poliomyelitis and its late effects. Over six decades, the patient endured numerous misdiagnoses—Chiari I malformation, ACTN3 polymorphism, myalgia, scapular cysts—and received inappropriate or counterproductive treatment advice, including recommendations for increased physical activity, which likely accelerated her muscle fatigue and functional decline.

The psychosocial burden was profound. Misunderstood and mislabeled as lazy, she faced stigmatization both socially and medically. This mischaracterization hindered her access to appropriate care and significantly affected her self-esteem, career opportunities, and overall quality of life.

This case highlights the urgent need for:

  • Greater clinical awareness of Post-Polio Syndrome, particularly in countries where poliomyelitis has been largely eradicated but late effects persist.
  • Holistic care approaches that address both the physical and psychological toll of chronic neuromuscular conditions.
  • Six Factors in Diagnosing Myositis
    https://swaresearch.blogspot.com/2025/09/six-factors-in-diagnosing-myositis.html
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    © 2000-2025 Sieglinde W. Alexander. All writings by Sieglinde W. Alexander have a fife year copy right. Library of Congress Card Number: LCN 00-192742 ISBN: 0-9703195-0-9

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