Diagnosed with CNS lupus after initial FND diagnosis
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My daughter was diagnosed with FND based on a clear CT/MRI and the doctors watching her have an “episode.”
What they didn’t do was run anything beyond routine blood tests. No EEG, no spinal tap, nothing else!
My daughter has lupus and Sjögren’s. She was convinced that her abruptly occurring episodes were autoimmune-related, thanks to ChatGPT. I thought they were more neurological.
She went to another hospital, where they actually listened to her. They performed a CT with and without contrast, a 12-hour EEG, and an extensive laboratory workup.
The CT showed that she had suffered a stroke! Her laboratory results also revealed numerous acute and chronic autoimmune abnormalities. Based on the CT, her test results, her signs and symptoms, and observation of an episode, she was diagnosed with CNS lupus—which is much more consistent with her presentation than FND.
Advocate for yourself and ask questions. Just because a doctor says something, that doesn’t necessarily mean it is so.
I wish you all the best!