Romina S
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13 Nov 2025
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2I agree 100% that it is more than a bit reckless to ignore crucial empirical evidence in favor of unproven nonsense like "FND".
As a matter of fact, when reviewing some of your wife's data, Wilson's definitely stood out to me as well. I was considering messaging you but later saw that you had already realized this for yourself and had addressed it directly in a post.
I don't think it's just a coincidence; it's at least one potential contributor to her myriad issues. It can explain her liver issues, perhaps GI-related symptoms, kidney function, and many of her neuro symptoms. I don't understand why it was ignored... Was it because the ceruloplasmin, though on the lower end of the "normal" spectrum, did not fall below the range? I don't think it should be overlooked.
Maybe it need not be entirely genetic either i.e., her liver could be more susceptible compared to the general population, but not necessarily because she possess one of the implicated mutations. You had mentioned your area lacking a proper water treatment plant. When was that? Does it remain that way? If it is no longer the case, could it have coincided with her abnormal copper urinalyses? Could the copper issue have manifested from poorly treated water in a hepatically vulnerable person? Maybe the situation improved in the years since but unfortunately left your wife with intractable damage. I think I also noticed that at one point she was mildly hemolytically anemic(?), which could also fit the Wilson pattern, though, maybe corticosteroids eventually masked her anemia with elevated hemoglobin and red blood cells. If not, have you looked into polycythemia vera? It can cause blurred vision, dizziness, and premature satiety after meals due to enlarged spleen.
I also agree with another commenter on a different page (Mel from the UK) and your initial suspicions that infections -- parasitic or otherwise -- should also remain on your radar, especially if any course of e.g., antibiotics ever caused at least temporary relief or complete cessation of some symptom(s) -- whether intended to or not. I find your wife's repeatedly elevated white blood cell counts strange, especially her neutrophils. She must have had some type of bacterial infection, but then I also noticed her positive reactions toward varicella and rubella. Did she develop shingles by any chance in the recent past? Could the facial asymmetry have arisen from something like Ramsay Hunt, but a pompous, fathead neurologist preoccupied with his pet FND diagnosis neglected to notice?
As for the autoimmunity-related labs like ANCA and ANA, even if "negative", did the lab(s) fail to provide the titer?
Maybe your wife could benefit from a more detailed autoimmune workup in say, the liver context, and definitely for an infectious disease workup. You mentioned she gets progressively more tired throughout the day. Could it be myasthenia?
My apologies for the numerous questions and if I missed anything you may have already posted or mentioned. I'm certainly no expert so forgive me if anything is nonsensical. These are just my impressions... None of this looks normal or "functional" to me. There is clearly something wrong and to pretend otherwise and ignore reality is moronic.
Bravo and THANK YOU for this website! Very clever name, too, may I add! I agree wholeheartedly that this latest iteration of "hysteria" is highly dangerous to patient welfare, illogical, unscientific, and absolutely asinine! I also think it an utter disgrace that female doctors have attached their names to this diabolical garbage, calling it a "feminist issue", while applauding the stigmatization and disenfranchisement of said female patients whom they pretend to "protect". Just recently, when viewing the Cleveland Clinic's page for FND, I noticed how quickly they reveal it was "formerly conversion disorder", as though that distinction were unnecessary and the former status remains relevant and inextricable from its current classification; and yet, they explain it can no longer be deemed a [psychosomatic] "mental health disorder" due to newer evidence from fMRI studies revealing "altered brain signaling". According to their circuitous rationale, somehow, this merely serves as further evidence of a so-called "software" vs. "hardware" issue and not a matter worthy of proper investigation and analysis beyond their hackneyed treatment recommendations with CBT, psychodynamic therapy, physical therapy, and neurotropic meds (for e.g., anxiety and depression). Meanwhile, the associated set of symptoms include sensory abnormalities, seizures, fainting, muscle weakness, paralysis, dizziness, dysphagia, tremors, brain fog… WOW! Who knew talking things out with a therapist or several sessions with a physical therapist could easily reverse poor blood flow or "misfiring signals" to the brain?! Or better yet, reverse paralysis, cognitive decline, debilitating pain, fatigue, vertigo, etc.
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