Maddie Aumann: From an FND Diagnosis to Maddie’s Law
FND Nope
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Maddie Aumann was diagnosed with FND before genetic testing identified a rare SCN9A disorder. Her mother, Christine Aumann, describes how the FND label continued to affect Maddie’s care even after that discovery, ultimately helping inspire Maddie’s Law.
She Asked if It Was Hemiplegic Migraine. Her Neurologist Diagnosed FND
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A Reddit user describes recurrent episodes of one-sided paralysis that were diagnosed as FND. She says she raised hemiplegic migraine herself but it was rejected. Three years later, a headache specialist diagnosed chronic hemiplegic migraine, and she reports substantial improvement with migraine treatment.
FND Diagnosis Followed by Myasthenia Gravis and Respiratory Failure
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A Reddit user questioned their FND diagnosis while being investigated for myasthenia gravis. Weeks later, they reported respiratory failure requiring intubation, an MG diagnosis and treatment with IVIG and plasma exchange. A later FND specialist assessment reportedly found no FND symptoms.
What I Wish I Knew When I First Got Diagnosed With FND
I was diagnosed with FND 2 years ago, with symptoms first appearing 3-4 years ago. I am a female in my 20s. Here are a few things I wish I knew when I first got diagnosed (these are all just my opinions based on my experience, they are not facts)clinician
Gaslit, Misdiagnosed, Then Heard: Living With MCTD, Small Fiber Neuropathy, and Dysautonomia
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A reader shared this account from a woman misdiagnosed with FND who later learned she had mixed connective tissue disease (now lupus), small fiber neuropathy, and dysautonomia. She writes about autoimmune effects on the nervous system, getting a second opinion, and finding doctors who listen.
Diagnosed with CNS lupus after initial FND diagnosis
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A young woman with lupus and Sjögren’s was diagnosed with FND without an EEG, spinal tap, or extensive laboratory testing. Further investigation at another hospital revealed a previous stroke and autoimmune abnormalities, leading to a diagnosis of CNS lupus.
Three Heart Conditions Misdiagnosed as FND
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A 38-year-old patient diagnosed with FND after limited testing was later found to have three treatable heart conditions that explained their symptoms, including extreme daily heart-rate fluctuations previously dismissed as anxiety.
It was Menieres
An ENT doctor suggested I had Menieres (an illness that attacks the balance nerve and the ear) in 2023. He wasn't sure as he said the disease is rare and my hearing loss was in the wrong frequency. He said there is no cure and I would have to wait for bur
It was the meds after all.
I was diagnosed with FND. Saw a neurologist and he said you must stop taking Keppra as it causes depression and anxiety and start on an alternative anti-seizure drug. I left with a step down plan and guess what, the depression and anxiety has gone.
Written Off with FND: The Hidden Dental Abscess That Changed Everything
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After years of severe disability and an FND diagnosis, Sam’s family discovered a large, hidden abscess beneath a previously treated root-canal tooth. Within weeks of its removal and treatment, he began to regain his vision, mobility, clarity and independence. This is their story and a reminder that unexplained symptoms still deserve thorough investigation.
Purely cognitive symptoms, no weakness, seizures etc.
One day out of the blue I felt incredibly anxious and depressed. I can identify the time of day this happened. I couldn’t sleep but got sleeping tablets from my GP. The feelings continued for a few days but then I had a series of vacant seizures.
