She Asked if It Was Hemiplegic Migraine. Her Neurologist Diagnosed FND

A Reddit user describes being diagnosed with Functional Neurological Disorder (FND) after developing recurrent episodes of severe one-sided weakness and paralysis. She says she questioned the diagnosis and specifically asked whether she could have hemiplegic migraine, but says her neurologist rejected that possibility. Three years later, she reports that a headache specialist diagnosed chronic hemiplegic migraine. She subsequently received migraine treatment and reports a substantial improvement in her symptoms.

This is a patient account rather than a published case report, and the medical records are not available for review. Her original account can be read in the r/FND post. She also discussed the experience in r/migraine.

Sudden paralysis in 2020

She says the symptoms began in the summer of 2020 while she was in a park with her baby. She suddenly developed severe weakness, numbness and pins and needles affecting the left side of her body and became unable to move. Afterwards, her left leg was dragging and some of the numbness remained. Her GP sent her to A&E, where she says she was initially sent home. She returned again before her GP pushed for admission under neurology. An MRI was performed but did not identify a cause for the attacks.

Diagnosed with FND

She subsequently arranged an appointment with a private neurologist. According to her account, the neurologist asked about her circumstances and focused on the fact that she was completing a PhD while caring for a new baby. She says she was diagnosed with FND and that stress was suggested as an explanation. She also reports being told that the FND misdiagnosis rate was very low and that she needed to accept the diagnosis. CBT was recommended, while she says she was told physiotherapy was unlikely to help. She declined because she remained unconvinced by the diagnosis.

The attacks continued and became increasingly frequent. She says that at their worst she was experiencing one or two episodes of paralysis every day. These were recurrent attacks rather than weakness confined to the original event.

She had already asked about hemiplegic migraine

The patient says she raised hemiplegic migraine with the neurologist herself, but the possibility was rejected. In 2023, her uncle, whom she identifies as a GP, suggested that the episodes could be hemiplegic migraine. She began looking into the condition again and reports experimenting with taking 900 mg of aspirin at the beginning of an attack. She says this resulted in her returning to normal until another attack occurred. This was self-treatment and does not establish the diagnosis, but she subsequently sought an assessment from a headache specialist.

A headache specialist diagnosed hemiplegic migraine

She says the headache specialist diagnosed hemiplegic migraine, despite her attacks sometimes occurring without significant head pain. She was subsequently treated with an anti-CGRP medication and Botox and reports becoming approximately 70% more functional. In her account, she describes the outcome plainly:

“I was misdiagnosed with FND when I actually have chronic Hemiplegic Migraines. I have improved with medication.”

What was the basis for the FND diagnosis?

The original neurologist's records are not available, so the account does not tell us whether positive functional neurological signs were documented or precisely why hemiplegic migraine was rejected. The later headache specialist's records are also unavailable. The chronology reported by the patient is nevertheless clear: recurrent unilateral paralysis began in 2020, FND was diagnosed, she raised hemiplegic migraine and says it was rejected, the attacks continued, and a headache specialist later diagnosed hemiplegic migraine. She then reports substantial improvement after migraine treatment.

Hemiplegic migraine can cause temporary weakness or paralysis on one side of the body and does not necessarily require severe headache during every attack. In this account, the patient does not say that hemiplegic migraine was diagnosed alongside FND. She says the FND diagnosis was wrong.

Sources

The patient's original account is available at “Misdiagnosed” — r/FND. She also discussed her experience in “Misdiagnosed” — r/migraine.