poster stating"FND(functional neurological disorder): confirming your diagosis

I have a condition known as Functional Neurological Disorder(FND).  I was diagnosed in 2003, when people were even less aware of the condition than they are now.  It had a different name(Conversion Disorder) and was labeled as a form of mental illness, rather than as a neurological condition.  

In my case, Conversion Disorder remains a useful description, although for many people with FND, Conversion Disorder doesn’t fit – which is one of the major reasons for the name change.

  Today, I want to talk about the relationship between Conversion Disorder and Functional Neurological Disorder, and share some suggestions for making sure that you are properly diagnosed, no matter what name may be used.

  • If you have had FND/CD mentioned as a possible diagnosis, or if you suspect that you have FND/CD and your doctor(s) will not or cannot confirm it, this post is for you!
  • Also, if you are one of the people who are not currently diagnosed, and doctors seem to have thrown up their hands at finding the cause(s) of your symptoms, you may want to read up on FND and see it if my description resonates with you- this could explain or partially explain your situation.
  • Finally, if your doctor has told you that you have FND, but that diagnosis just doesn’t feel right, please read on, as I list ways to double-check your diagnosis!

What’s the difference between Functional Neurological Disorder and Conversion Disorder?

Functional Neurological Disorder is identified as a neurological condition where for unknown reasons a person is experiencing a variety of neurological symptoms, while not having any recognizable forms of structural damage in their brain or body.

Conversion disorder is considered a psychological condition, a less common response to trauma, where a patient has physical symptoms(such as seizures, paralysis, urinary dysfunction, myoclonic jerks, or cognitive fog) instead of fully connecting with the emotional impact of the trauma.

When you look into the condition, most websites will suggest that the terms are all synonymous, and it is true that they all describe the same condition, just from different perspectives. The important thing is that your doctor recognizes that this is not an entirely psychological condition, and there are treatments that can help!

Digging into the history of the term, the person who first coined it was an early neurologist, John Ferrier, who noted that for some of his patients, physical therapy and other treatments would lead to the symptoms moving or ‘converting’ from one part of the body to another, rather than disappearing after treatment.

He found that some of his patients would come in with difficulty controlling muscles, say, in their right arm, and after physical therapy, they would suddenly find themselves with similar issues in their left arm with their right arm fully under control.  He called this ‘conversion hysteria’.

woman shaking her head in blurred image
Freud believed conversion disorder ‘converts’ emotion into motion!

Sigmund Freud noticed patients who had certain forms of psychological stresses would sometimes ‘convert’ those stresses into physiological symptoms.

These ‘converted’ symptoms could then shift over time to other physical or emotional symptoms. For him, this was a sign of repressed trauma, and the condition was considered psychological. He shifted the name from conversion hysteria to conversion disorder.

Conversion disorder is strongly associated with mental illness and trauma. Conversion symptoms are usually seen as a response to stress and emotional triggers.

Conversion disorder is generally considered a diagnosis of exclusion(meaning that it’s a diagnosis made after other possibilities are exhausted), and required both a psychiatrist and a neurologist to confirm the diagnosis.

The name change started in the mid 2000’s, after neurologists noticed that many patients had functional symptoms, but no indicators of any trauma preceding their symptoms.  The lack of trauma in so many cases was enough to convince researchers that something was missing. Neurologists started to really take an interest in FND.

What makes FND so different?

‘Functional’ indicates that while the symptoms are real, there is no identifiable structural cause.  For most neurological conditions, they can point to a part of the brain or body that isn’t working correctly or is sending signals that cause the symptoms.  

There is damage that can be found on some form of scan, or through testing for specific chemicals in the bloodstream.  

Functional symptoms don’t have anything like that, which is why people with functional symptoms are sometimes accused of malingering(pretending to be ill for secondary gain).

Functional symptoms can be identified through certain forms of tests(such as the Hoover test). For doctors unfamiliar with such techniques, the fact that distraction can stop or change symptoms, and that symptoms vary from person to person and over time is misinterpreted as signs of faking. In reality, the condition is outside of the conscious control of the patient.

Recent studies have shown that there actually are structural differences in the brains of people with FND, with the main differences being in a part of the brain that recognizes control of the body.

image of a brain with text reading "seeing the beautiful brain today" underneath
FND is all in your head – the same way brain cancer or a brain injury is! It is where the problem resides, but that doesn’t mean that you can make it better through force of will!

When I speak of this lack of knowledge, what I mean is this: if I decide to pick up a glass of water, I just think ‘I’m going to pick up this glass of water’ and then I do.

My FND symptoms might kick in after I pick up the glass and cause me to squeeze the glass more tightly than necessary(others with similar symptoms find they can’t grip the glass tight enough to pick it up).

The signals to squeeze the glass were sent by my brain, but I don’t know it. To me, it feels like all I did was tell my hand to pick up the glass – I wasn’t aware that I also sent a signal to tighten my grip.

In my case, that hand tightening signal was likely caused by some stress at the moment, anything from a cold breeze to a moment of uncertainty or fear, to having a cold or similar bodily stress. Instead of being fully aware of the stress, my brain sent the signal to squeeze the cup.

Neurologists and psychologists have seen many patients over the years who have experienced trauma and then developed functional symptoms.  

These functional symptoms have varied between patients and over time, often encompassing urinary dysfunction, psychogenic non-epileptic seizures(PNES), gait dysfunction, movement disorders(tonic-clonic movements, myoclonic tics, and more), dystonia(muscle sets contracting and freezing that way), cognitive fogginess, weakness, or limb paralysis.

Some patients have a history with mental illness and emotional trauma, some have a history of physical trauma, and others apparently have developed symptoms spontaneously.  

The good news about FND

Neurologists now can diagnose patients with any of these symptoms or symptom sets as having FND without requiring a psychological consultation, which simplifies the diagnosis process.  

FND is not considered a progressive or deadly condition.  It is not expected to shorten your lifespan in a measurable way, and it is not something that can only get worse.  

It is possible to recover from FND, and commonly people with FND diagnoses get better over time, with appropriate treatment and support.

With modern testing, neurologists have found that many patients with a firm FND diagnosis show extra activity in the area of their brain associated with awareness of actions.  

The modern theory is that people with FND, for whatever reason, have damaged to their ability to recognize that they are, in fact, in control of their own actions in certain cases.  

How or why this happens has not been determined, and the disorder appears to be related to both neurological and psychological issues.

The challenge of diagnosis

For many conditions, there are diagnostic tests that can, in black and white, confirm or deny a doctor’s hunch on the identity of the condition.  

For example, my partner has pernicious anemia, a condition caused by his body’s inability to absorb vitamin B-12. Once his B-12 levels were tested and he was found to have an unmeasurably small amount of it, that pretty much proved that he had B-12 absorption issues as his diet was not low in B-12.

x-ray of a hand signaling 'ok'
FND isn’t going to cause any abnormal test results or be visible on any scan

There is no such test for FND.  FND isn’t caused by the presence or absence of a particular vitamin or mineral and isn’t associated with the breakdown of any system in the brain that can easily be identified.  

FND won’t show up from any scan or test that doctors are likely to prescribe, and its hallmarks are poorly identified or understood.

There are positive tests to confirm the diagnosis, but as the FND diagnosis is relatively new, many neurologists are unaware of these tests, and so incorrectly identify it as conversion disorder, a mental illness that should be treated by a psychiatrist.

My neurologist(who specialized in movement disorders) explained at the time of diagnosis that he was sure I had conversion disorder since the nature of my movement symptoms did not align with any other movement disorder.  

In other words, it was a diagnosis of exclusion, but he had the correct expertise to be able to confidently do so.

My diagnosis of conversion disorder

My myoclonic jerks didn’t work like tics or like seizures(I had already tested negative for epilepsy) or dystonia or tremors.  By going down the list of what my movements didn’t look like, and by seeing when I was symptomatic and the inconsistency of my symptoms, he concluded that I had conversion disorder.

His expertise in movement disorders allowed him to know this – if he wasn’t familiar with any of the major dysfunctional movement types, he might have considered one of those conditions.  Currently, only a neurologist’s opinion is required to identify FND.

My next step in diagnosis(which is no longer required) was to see a psychiatrist who looked at my life history and agreed that my life stresses and traumas lined up well with a conversion disorder diagnosis.

My symptoms tended to occur during high-stress times and would worsen with stress, especially emotional stress. Focusing on things I enjoyed would often reduce my symptoms, at least a little, and trying to suppress my emotions would lead to explosive symptoms.

This was a near-perfect fit with conversion disorder.

A psychiatrist’s opinion is not required now for the diagnosis of FND. This makes getting diagnosed easier, and cuts out a lot of the stigma of mental health issues.

Potential complications

If you are told you have FND, but actually have a different(or additional) condition, doctors sometimes miss the additional issues and assume all your symptoms are FND-related.  

This is one of the most dangerous possibilities with FND as that other condition likely has helpful treatments and appropriate supports. Your FND treatment likely won’t make the condition worse, but leaving it untreated likely will.

Also, if you actually have FND but are misdiagnosed by the doctor as having something else, you won’t be getting your FND appropriately treated and you are unlikely to recover.

You’re also wasting energy(and likely money) on unhelpful treatments and possibly going through unnecessary testing or unnecessary treatments.

Making sure your diagnosis is correct

The first step you can take if you have been told that you have FND is to make sure that it’s not just a diagnosis of exclusion.  If your doctor tells you that they’ve done the tests they can think of and nothing else makes sense, you will want to get a second(or third) opinion.

collection of pink markers gathered together with one brown one to the side
A diagnosis of exclusion occurs when all the other possibilities have been accounted for(pink), and the only option for diagnosis still stands(brown). The problem is that many neurologists don’t consider all of the possibilities, and others do not know that the FND diagnosis can be confirmed through testing.

If your doctor explains that he or she confirmed your diagnosis through testing(Dr. Stone has a guide for neurologists on functional symptoms), then you can rest assured that you do have FND.

At this point, neurology is the specialty that studies and usually diagnoses FND, but not all neurologists are similarly familiar with the condition or adept at diagnosis.  

Also, some still believe it’s entirely psychological and cannot help you find proper treatment.

If your neurologist seems unfamiliar with FND, look elsewhere. The most likely subspecialty to recognize your condition would be either a movement disorder specialist or, in some cases, a neuropsychiatrist.  

You will want to seek those specialties out even if your symptoms are different, like nonepileptic seizures, paralysis, or temporary vision or hearing problems.

FND is actually surprisingly common but is much less commonly diagnosed, due to individual doctors misunderstanding or failing to diagnose FND.  

For many of them, conversion disorder is a mental illness that they heard about once in med school, and they are not up to date with the condition.

If you think you are misdiagnosed as having FND

If your doctor seems to be jumping to FND a bit too quickly for your comfort, or their description doesn’t seem to match your experience, you may want to rule out rarer or frequently misdiagnosed conditions.

zebra standing in a field
Doctors are regularly instructed that when they hear hooves, they should look for horses, not zebras(rare conditions) – the challenge is that sometimes your condition IS a zebra – and sometimes they insist it’s a horse anyway!

There are several rare genetic conditions that doctors may not think of, including a condition called Ehlers-Danlos syndrome that weakens and stretches connective tissues.

There is also a percentage of people with Lyme disease who are misdiagnosed as having FND, so you also may want to do some searching for a Lyme-literate doctor(many doctors think that the most easily available tests are definitive, and apparently testing negative on those doesn’t mean you don’t have Lyme).

There also sometimes is confusion about Multiple Sclerosis, essential tremors, or idiopathic dystonia in relation to an FND diagnosis.  

It’s also possible to have multiple diagnoses, which generally means that your FND is exaggerating your other symptoms leaving them more debilitating than is standard for your condition(s).

So, if your doctor’s explanation isn’t quite adding up for you, please make sure that you double-check your diagnosis and get a second(or third, or fourth) opinion.  

A vital part of FND recovery is the acceptance of the diagnosis, so if you are feeling uncertain about your diagnosis, doing those extra tests or knowing that you have been diagnosed by a neurologist familiar with FND can go a long way towards accepting your diagnosis.  

The reason acceptance is so important is that you need to accept that you can gain some control over your symptoms in order to do so.

When your symptoms occur, it’s much more complicated than simply telling them to stop, but you can learn to develop better control if you recognize that on some level, you can learn to control your symptoms.

Treatment for FND

Current treatment for FND varies by doctor, but those most in the know encourage their patients to participate in intensive cross-disciplinary treatment programs.  

BEST(mayo clinic) and MoRe(Fraizure Rehab) are two of the best examples of these programs in the US. They combine Physical Therapy, Occupational Therapy, and additional therapies with psychological supports to enable patients to recognize their internal blocks and retrain their brains to realize that they can control their symptoms.  

physical therapist working on the shoulder of a patient as she raises her right hand
Physical therapy can be very helpful for FND patients, as long as the PT has appropriate training

The programs are short term but intensive(both programs mentioned are 1 work week long but all day each day.).  

I can personally attest that the MoRe program was transformational for me, and it really set me on a great path to recovery.

Aside from the intensive treatment(which teaches the patient a lot of self-management tools), most people benefit from psychiatric support and by taking antidepressants.  

To my knowledge, there isn’t yet a proposed explanation for the cause of FND if there is no history of trauma.  

Even if there isn’t a recognized trauma involved, the sudden debilitation that often happens to FND patients is in itself traumatic.

Having a therapist help you tease apart how to live your life after FND and help you manage the emotions involved in being suddenly disabled can be really helpful.

A therapist is also helpful for recognizing mental and emotional triggers that often set off conversion/FND symptoms.

Some patients have found cognitive behavioral therapy useful.  

CBT is a psychological tool that teaches a person to break apart instinct-level responses and identify causes and triggers that set off physical or emotional responses.  

Better recognizing and articulating stresses and triggers can really help with processing them and really learning from yourself.

Other than the intensive therapy programs and talk therapy in general, the main observation on FND treatments is that FND patients are very susceptible to the placebo effect.  

This means that while a particular medicine or behavior may not help us, if we believe it will help us, it may, even if the medication simply doesn’t work that way.

The placebo effect is pretty much its own field of study, but the upshot of this knowledge is that you will likely feel better from treatments you believe in, but if you doubt a treatment will be effective you also will likely be right.

Your best bet is to approach treatment with an open mind and to select treatments that you could afford to maintain if they do help.  

Whenever possible, avoid overly invasive or expensive procedures. With FND there is no physical or structural problem, at least nothing that can be corrected by surgery or medication.  

collection of multi colored pills scattered in a pile
There is no medication that ‘cures’ or even manages FND, but some medications can help reduce symptoms

If FND is your primary problem, medications may help your symptoms, but will not cure the condition.  

The closest thing there is to a cure for FND is learning to live with the condition and resolving whatever traumas or internal conflicts brought it about – about ⅓ of patients do actually have a spontaneous remission after treatment, with another ⅓ showing extreme improvement(the final ⅓ show little or minimal improvement).  

Any FND discussion or support group may make you feel like FND is incurable, since most folks on there are either newly diagnosed or have had it for a long time and aren’t recovered, but remember that most people who improve significantly aren’t likely to keep spending time in the group!

Conclusion: making sure you are properly diagnosed if FND is suspected

The most important thing with an FND diagnosis is making sure that the person making your diagnosis is FND aware, and not making a diagnosis of exclusion.  The other important thing is that if you do have FND, your doctor understands that it is not a psychological condition, but a neurological one that can be responsive to trauma or stress.

If you are having a tough time finding an FND aware doctor, focus on movement disorder treatment centers or organizations that have an FND program.  These are most likely to be larger research hospitals.

If any aspect of your FND diagnosis feels incorrect(or incomplete) you may need to see additional specialists, like a Lyme literate doctor, a genetic disorder specialist, or a neurologist who specializes in epilepsy or movement disorders.  

You deserve to feel confident of your diagnosis – whether a diagnosis of FND is correct, incorrect, complete, or incomplete.  The more you know and the better you understand it, the more likely you are to find a helpful treatment and improve your situation!

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10 Comments

    1. Elisabeth – so glad I could help! There are a huge number of misunderstandings and disinformation about the condition, so I’m doing my best to dispell the myths while being true to my own experiences of FND being very closely entwined with my mental and emotional health. FNDhope.org and Neurosymptoms.org are also great resources for both of you if you want to know more. Neurosymptoms.org is run by a neurologist, Dr. Jon stone, who specializes in FND. Stanford has an excellent treatment program, and an FND support group as well!

  1. I would like to add that there are a small number of people who do get worse, even with physiotherapy and psychotherapy. My experience of FND has been a progressive decline with a relapsing remitting pattern over several years. Some relapses leave me with new symptoms and increased disability.

    For the purposes of inclusion i think it is important to recognise all types of prognosis. Thanks.

    1. Jasmine, thank you for sharing. I have had a lot of symptom shifts, but I have experienced them more as ‘different’ than worse. As with most conditions, getting older doesn’t help, and stress increases definitely worsen my symptoms too! Again, I really appreciate you sharing your experience, and I hope you can find some relief!

  2. My niece has been fighting for a diagnosis since October! She is a type 1 diabetic also. She is 49. Has been a diabetic since she was 17. She has been to several doctor’s and on several medications. Her symptoms are digestive and SEVERE pain in her side. She was told is was an inflamed gall bladder, so she had that removed. No help. She is seeing a neurologist now, just only getting different meds. You mentioned Mayo. Which one? Which doctor?

    1. Carolyn,
      If your niece has FND, she should see an FND-aware neurologist. I have a few posts on FND that may be helpful, and FND Hope has a doctor search guide for the doctors they are aware of with FND experience.
      The Mayo clinic in Rochester, Minnesota runs the BEST treatment program, though I don’t know who there to see on the topic. I was diagnosed at the Center for Parkinson’s Disease and other movement disorders at Columbia-Presbytherian in NYC. My current neurologist, Dr. Daniel Schneider, has FND-aware PT’s at UMDNJ in New Brunswick, NJ. I was treated at the MoRe program in Louisville, KY, run by Dr. Kathrin Lafaver, who has since relocated to Chicago, Northwestern, I believe. Stamford also has a treatment program, as does the Cleveland Clinic and the University of Michigan, Lansing. There are options out there. The best resource for your search is FND Hope

  3. Thank you for this post, Alison. I’ve been researching treatment facilities for my son who has full-blown depersonalization/derealization disorder and I kept finding related links to FND. As I read more about it, I think it would benefit him to be tested for this. Aside from checking all the boxes in the DPDR tests, he also checks many of the boxes in the symptoms for FND. We had him tested for MS and Lyme diseases recently but they didn’t fit. I have found no doctors or therapists in my area with any experience in either DPDR or FND. My son is 27 and has been dealing with DPDR for 12 years but many other symptoms were there longer. With covid lockdowns, his isolation has become his comfort and his hell. He feels like he can no longer manage his own care. How do I find someone who can help him if there aren’t any doctors nearby who even know what it is?

    1. Paula,
      Thank you for reaching out! I’m so sorry your son is in such a tough position. Many folks with FND find that they need to do a bit of traveling to see an appropriate specialist, but since once things stabilize you’re talking about an appointment once every few months, it’s often a worthwhile investment. I suggest you try FND Hope’s provider information: https://fndhope.org/living-fnd/managing-fnd-find-provider/ which lists the providers that others with FND have found helpful. I’ve also got a post written on doctor shopping that may help you and your son to find appropriate practitioners.
      It isn’t easy, but there definitely are the right professionals out there!
      I hope you and your son are able to find the right folks to help him regain more control over his life and health!
      Alison

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