Two weeks ago, during class, she experienced a sudden severe relapse in the form of myelitis extending from the medulla down to the T1 vertebral level, along with spinal cord swelling (contrast enhancement on magnetic resonance imaging). This resulted in spastic hemiplegia with severe painful dysesthesia which led to her being hospitalised. Unfortunately, Jane experienced a significant decline in her mobility status after the attack: her EDSS score worsened from 3.5 to 6.0.

She is now reliant on a cane for walking, which has greatly impacted her ability to carry out her usual activities. This event has made her fearful about what the next relapse will bring.

1.5 years later she experienced numbness and paralysis in the entire left side of her body followed by deterioration in vision in the left eye from 20/30 to 20/160. She underwent a full clinical examination which raised a suspicion that a demyelinating process may be occurring. A diagnosis of NMOSD was given, for which the patient received acute high dose intravenous steroid therapy. Diagnosis was then confirmed by a positive anti-AQP4 Ab seropositive status.

Abeni is fearful of the next relapse. The possibility of permanent blindness from additional relapses is a threat to her career and dreams. Abeni and her medical team are now exploring a maintenance treatment for her condition.

3 identified relapses with one leading to an ER visit occurring within a year of diagnosis led to a change in treatment.

For the past 5 years, Rin has perceived her condition as stable, so she stopped following-up with her doctor as regularly as the team would like. She is still having to cope with disabilities that accumulated from her previous relapses.

Occasionally, she experiences pain in her legs, especially after a long day, and sometimes she has slightly blurry vision. She jokes with her friends about these symptoms, saying that she’s getting old and she forgot to report these symptoms to her medical care team.

During a random check-up, her doctor became aware that the occurring symptoms might be indicative of a relapse, and decided that a new maintenance treatment is needed to stabilise her condition before it’s too late.

However, it was following a sudden hypoesthesia, that developed on the left side of his body, that he finally was diagnosed with AQP4 Ab+ NMOSD 7 years ago. Spine and brain MRI revealed longitudinal extensive transverse myelitis (LETM), ranging from the medulla to the thoracic spinal cord, manifesting in pain and further weakness in his limbs. Following this diagnosis, ISTs were prescribed to prevent the recurrence of relapses.

LETM recurred after 3 years. Maintenance treatment was changed, which seemed to help stabilise his condition and there was no LETM recurrence for 4 years.

However, despite apparent stability, David continues to face challenges in carrying out his daily tasks as a result of his clinical history. David and his medical team are concerned that the next relapse could leave him bedridden, blind or worse.