u/Horror_Table3453

I was recently diagnosed with Functional Neurological Disorder (FND) after almost two years of investigations, and I’m still trying to make sense of it all.

Over the past two years I’ve experienced a range of symptoms, including: Episodes of paralysis or weakness in my limbs, stroke-like symptoms, seizures and jerking movements, limb weakness and numbness and other neurological symptoms that come and go. During those two years I often felt like I wasn’t being believed. Despite experiencing very real physical symptoms, I was repeatedly told that nothing was wrong, and I left many appointments feeling like people thought I was exaggerating or making it up.

To eventually receive an FND diagnosis was almost a relief because it finally acknowledged that something *is* happening. At the same time, I can’t shake the feeling that it’s a diagnosis that’s been given because no one has found another explanation. I don’t know if that’s a common feeling among people with FND, but it’s something I’m struggling with.

One part that particularly upset me was being asked to record videos of my symptoms for diagnosis. I completely understand that symptoms can fluctuate and may not be present during appointments, but emotionally it reinforced the feeling that I had to “prove” I was ill.

Since receiving the diagnosis, I also haven’t had much explanation about what FND actually is, why it happens, or what treatment looks like. I’ve been told I have FND, but not really what to do with that information. I’ve done some reading and I keep coming across the analogy that “the hardware (the brain and nervous system) is intact, but the software isn’t functioning correctly.” It seems like a helpful way of explaining it, but I’m curious how accurate neurologists and other healthcare professionals actually think that analogy is.

I’d really appreciate hearing from:
People living with FND - did you have similar symptoms or experiences? How did you come to terms with the diagnosis?
Neurologists or healthcare professionals - how do you approach FND? How confident are you when making the diagnosis, and what do you wish patients understood about it?

Anyone who’s found effective ways of managing symptoms or improving quality of life.
I’m still very early in this journey and, if I’m honest, I’m feeling quite confused. I don’t know what my next steps should be, what recovery looks like, or whether these symptoms are something I’ll be living with long-term.

I’d really appreciate any experiences or perspectives.

I was recently diagnosed with Functional Neurological Disorder (FND) after almost two years of investigations, and I’m still trying to make sense of it all.

Over the past two years I’ve experienced a range of symptoms, including: Episodes of paralysis or weakness in my limbs, stroke-like symptoms, seizures and jerking movements, limb weakness and numbness and other neurological symptoms that come and go. During those two years I often felt like I wasn’t being believed. Despite experiencing very real physical symptoms, I was repeatedly told that nothing was wrong, and I left many appointments feeling like people thought I was exaggerating or making it up.

To eventually receive an FND diagnosis was almost a relief because it finally acknowledged that something is happening. At the same time, I can’t shake the feeling that it’s a diagnosis that’s been given because no one has found another explanation. I don’t know if that’s a common feeling among people with FND, but it’s something I’m struggling with.

One part that particularly upset me was being asked to record videos of my symptoms for diagnosis. I completely understand that symptoms can fluctuate and may not be present during appointments, but emotionally it reinforced the feeling that I had to “prove” I was ill.

Since receiving the diagnosis, I also haven’t had much explanation about what FND actually is, why it happens, or what treatment looks like. I’ve been told I have FND, but not really what to do with that information. I’ve done some reading and I keep coming across the analogy that “the hardware (the brain and nervous system) is intact, but the software isn’t functioning correctly.” It seems like a helpful way of explaining it, but I’m curious how accurate neurologists and other healthcare professionals actually think that analogy is.

I’d really appreciate hearing from:
People living with FND - did you have similar symptoms or experiences? How did you come to terms with the diagnosis?
Neurologists or healthcare professionals - how do you approach FND? How confident are you when making the diagnosis, and what do you wish patients understood about it?

Anyone who’s found effective ways of managing symptoms or improving quality of life.
I’m still very early in this journey and, if I’m honest, I’m feeling quite confused. I don’t know what my next steps should be, what recovery looks like, or whether these symptoms are something I’ll be living with long-term.

I’d really appreciate any experiences or perspectives.