It’s so interesting how it seems like so many FND patients & caregivers who come to the same skeptical belief that we have, all seem to arrive at the same logical conclusions independently. So many things I’ve read in your blog are thoughts I had myself on my own at some point. There are a few things in this very post that I have spent a lot of time thinking about- how do you even rule out FND? How do you determine someone doesn’t have it? Even more tricky, how do you decide when to replace an existing FND diagnosis with a new diagnosis a patient just tested positive for, rather than marking it down as a comorbidity? What would a neurologist need to convince them to replace it with the new dx? Not to sound paranoid but it certainly is a convenient way to evade having to admit someone made a mistake. And how can a patient ever prove it was a mistake?

There’s a neuroscientist on TikTok who had FND. She was a fierce proponent that recovery is possible, because PT/OT worked for her and now her FND is in remission. Coincidentally, she was diagnosed with narcolepsy with cataplexy & began treatment for that right around the time she began PT/OT for her FND… curious, isn’t it?

You mentioned dropsy where in the past I have used headaches. Imagine if every patient who came into a neurology clinic with a headache was just diagnosed with Headache Disorder (HD) instead of viewing headaches as a symptom that could be arising from any number of causes. Now imagine if we just treated everyone with HD with the exact same treatment. It might help temporarily if the treatment is something like ibuprofen, but it won’t address the underlying cause. Is it a sinus headache that could be alleviated with an antihistamine? Is it a brain tumor that needs to be surgically removed? Is it the result of dehydration and it would go away if the person just drank some water? If we just treat them all with ibuprofen, some might just miraculously get better and be convinced that the treatment works and their HD is cured! While others will quite literally die. I believe this is why there’s a good amount of people who insist that CBT cured their FND. Learning how to tolerate distress and process your emotions is beneficial for anyone, and I’m sure it reduces cortisol levels which is beneficial for the body overall. Every disease is liable to improve when cortisol is lowered. So for some, their FND symptoms may be the result of a relatively benign condition (like the dehydration or allergies in my headache example) and their symptoms will go away and never return and there may never be a clear explanation as to why, because it was just some underlying cause that resolved on its own or got better once their cortisol was lowered. But some never do get better, and refusing to retest or do additional tests is illogical. I just don’t understand why laypeople are the ones shouting from the rooftops that the things the doctors are doing don’t make any sense. They’re the ones with higher education in a scientific field, they’re the ones who should be following logic and reason and the scientific method. We shouldn’t have to convince them to do those things.

Yo WHAT is the deal with these drs’ attitudes towards patients who even dare to QUESTION the legitimacy of an FND diagnosis?? Is the mafia behind this? 😂 I half expect you to get angry anonymous phone calls that are clearly coming through a voice-changer saying something like “you better stop asking questions… or else.” and then just hang up. This is truly wild. What do these drs stand to gain by arguing with you anonymously?? What is their goal? Surely they don’t think you’re going to actually be swayed by them being so rude, and they can’t possibly think that speaking to you and the writers here so rudely will make any of us trust what they’re saying and stop discussing our skepticism, so what’s the point of them doing all this? It’s just very childish and reveals an emotional dysregulation that’s honestly quite concerning coming from a doctor who holds so much power over others’ lives.

To the OP med student in Khazakstan- being in your 4th year of med school by age 21 is incredibly impressive! I have a feeling that intelligence will benefit you when it comes to finding an answer to your medical problems. I hope you find that answer soon.