Functional Neurological Disorder is a common but poorly understood condition.
Being diagnosed with Functional Neurological Disorder isn’t just overwhelming for you as the patient, but it also can be a challenge for your doctor as well.
The symptoms look like neurological symptoms(each FNDer may have a different symptom set), but don’t have the usual causes or test results. Examples of FND symptoms include seizures(often referred to as PNES/NES), myoclonic jerks, limb paralysis, bladder or bowel dysfunction, gait disruption, cognitive issues, sensory symptoms, stroke-like symptoms, full-body weakness, tremors, temporary aphasia, and temporary blindness(for more details click here).
In other words, the commonality is more about the lack (of confirmable physical causation) than it is about a similarity in symptoms.
Contrary to popular belief(including within the medical community), FND is NOT a diagnosis of exclusion, but a condition that does have confirmatory testing and some common factors within the patient population.
FND is generally a stress-responsive condition and is often triggered at least partially by trauma in some form. It sits squarely at the intersection of neurology and psychiatry, and it is treatable.
In this post, we’re going to explore what specialists are best to see to confirm and manage an FND diagnosis, and the extra obstacles to expect when seeing medical practitioners.
I’ll also be sharing tips and tricks for how to ensure that you get the best possible treatment for both your FND and any other condition you may have.
While my focus for this post is FND, I suspect that people with other conditions(especially those that can’t be externally validated) will find this useful!
You should have a neurologist managing your case
Functional Neurological Disorder(FND) was labeled as psychiatric when I was initially diagnosed, and many neurologists still believe it is.
For this reason, many people diagnosed with FND by neurologists are immediately instructed to see a psychologist or psychiatrist rather than getting support from the neurologist.
The modern understanding by FND-aware neurologists, though, is that neurologists should actually be right in the center of patient care management.
FND patients improve most when seen by knowledgeable team, including physical, occupational, speech, and/or talk therapists.
That combination of appropriate therapists(depending on symptoms) can help us, as patients, to regain control over our bodies, and better manage our symptoms.
Neurologists can write appropriate prescriptions to guide the treatment, and potentially recommend appropriate therapists – or partner with therapy programs at their own hospital to develop an appropriate treatment program.
Unfortunately, too many neurologists haven’t kept up with the research, and simply reference their med school notes or concepts that define FND(then referred to as conversion disorder) as psychiatric, and dismiss their patient out of hand.
I have heard from many fellow FNDers that after an initial neurologist appointment they receive no guidance beyond “you should see a psychiatrist or psychologist”, with no follow-up and no further instructions or support.
That isn’t what should happen.
FND often includes shifts in symptoms over time, which can be very stressful when they occur.
Most symptoms appear to be neurological symptoms, but each major change requires confirmation that it doesn’t align with a different disorder.
With regular neurologist visits, each major symptom shift can be discussed by the patient and doctor, and the neurologist can suggest appropriate testing to rule out other possibilities, which can help the patient better manage stress – and catch any new condition that may arise at an early stage.
Too many people with FND have every complaint dismissed as “obviously an FND symptom” without the appropriate confirmatory testing.
There are important lines to be drawn here, and too many doctors are dismissive of the complaints by people with FND, in a similar way to how many patients with mental illnesses have their medical complaints ignored or dismissed due to their physicians’ bias.
People with FND don’t die from FND, it’s not a progressive condition.
People with FND can and do die from missed diagnoses due to new symptoms being dismissed when they actually are warning signs of other conditions.
Finding the right neurological care manager for you
While neurology is the right area of specialty to see, finding the right individual neurologist can be very tricky. Any neurologist who doesn’t understand or believe in functional symptoms isn’t a good option for you, and may do more harm than good.
This scientific paper advises neurologists on how to understand functional symptoms. Reading it over may give you a very good sense of what behaviors you’d like in a doctor – and could help any doctor you see to better understand how to work with you.
Some neurologists are likely to overprescribe testing, as they are trained that neurological symptoms absolutely must have physiological causes, and may keep digging until they can find one(which isn’t going to happen, ever, for true FND symptoms).
While it’s very important to test thoroughly for a neurological cause, there comes a point where additional testing isn’t going to actually help an FND patient and will delay you getting the help you need.
You do want to start out seeing an expert in whatever your symptom set resembles so you can rule out other neurological causes. For example, if you have seizures, you want to see a neurologist who specializes in them.
In my case, a movement disorder specialist was the best fit, and that was who correctly diagnosed me.
You may need to go to a larger city or a university hospital to find the appropriate specialist, but generally, you will only end up seeing this doctor a few times a year(or less), so it’s often worth the trip.
Look for doctors who specifically mention “functional” symptoms or any synonyms with FND(such as “psychogenic”).
Once you know that your specific symptoms don’t have a more standard neurological cause, the precise specialty of the neurologist is less important, as long as they recognize the reality of FND and give new symptoms appropriate attention.
Some neuropsychologist or neuropsychiatrists can also provide great services to patients with FND.
Challenges seeing doctors unfamiliar with FND
Because of the stigma on mental illness and other forms of bias, going to an emergency department with FND is likely to be extra stressful and may be dangerous.
All too often even medical professionals wrongly believe that psychogenic/functional is synonymous with fictional.
The risk of medical trauma and medical gaslighting is extremely high with FND and other conditions that aren’t easily seen through testing or scans.
While doctors other than your neurologist do not need to be familiar with FND, it is especially important for them to respect the reality of your FND symptoms and work to understand your triggers.
Some doctors cannot accept the reality of functional symptoms, and insist on alternative diagnoses or focusing on your FND symptoms when you’re trying to discuss other symptoms or additional conditions.
There also are doctors who assume that any symptoms you have must be due to FND.
You need a doctor who believes you and will be your partner in managing your condition.
To do that when you have FND, they need to believe you when you say something is(or isn’t) related to your FND.
They also must work with you to focus on the problem you want them to help you with, even if your FND symptoms seem more interesting/distracting/obvious.
Example of a negative experience
One of the many challenges working with new doctors while managing my FND symptoms is that if the doctor is anxious, their anxiety increases my symptoms.
Being sick is an additional form of stress, which tends to my symptoms glaringly obvious.
One doctor who shared an office with my Primary Care Practitioner saw me for the first time when I came in because of ongoing issues with bronchitis.
While taking my blood pressure, not only was my torso shaking, but my left arm was kind of moving all around(the cuff was on my right arm and I was focusing on not moving it, by shifting the movement into my left arm).
Rather than talking to me about my bronchitis symptoms, she focused on my movements and my FND symptoms, asking unnecessary questions about its existence, my history with it, and how the condition worked.
I was tired, struggling to breathe, and frustrated that this was my third visit to the office due to the bronchitis. I just needed her to check my lungs, possibly give me a breathing treatment, and prescribe an antibiotic to help me fight off the infection.
Instead, she grabbed my arm, trying to make me hold still, and my whole body reared backward, my legs stood straight out, then I doubled over(apparently I also said ‘no’ pretty loudly too)
This surprised and scared her a bit.
She then overreacted, asking permission for each step in the exam(“can I look in your ears now?”).
Almost all of her questions focused on my FND, rather than the bronchitis I was there for. She radiated anxiety and fear, which made my symptoms even harder to control.
What I needed was an empathetic doctor who would treat my bronchitis.
Instead, I had a doctor who focused on my movements and triggered more symptoms.
While I did end up also getting a breathing treatment to help my bronchitis, the experience itself was much more stressful than necessary because of this doctor’s ignorance of FND.
I’ve had doctors misdiagnose me, talk down to me, express deep-seated ignorance, act as if my symptoms were behaviors, and otherwise glaringly misunderstand the situation.
I’ve also had some amazing and empathetic doctors who respected my explanation, asked appropriate questions for clarification, and have understood and respected my experiences.
They have worked closely with me to protect my long-term health without making assumptions about my FND symptoms.
The good doctors are out there, it just may take more research to find them.
FND and psychological and psychiatric supports
You also may want to talk to a psychiatrist, as antidepressants are a proven treatment for FND, and finding the right one for you can be challenging.
Most people, in general, can benefit from talking with a trained psychologist, and FNDers are no different.
FND is a neurological condition that impacts our lives, our quality of life, our day-by-day activities, and so is traumatic and stressful in and of itself.
It’s something worth talking out with a trained professional.
Above and beyond talking through the stress of change, for many of us, there are events, thoughts, or actions that trigger our FND symptoms.
Psychologists can help us to identify these triggers and better understand their significance and how to manage them.
When searching for a good psychologist, the most important thing is that they believe your FND diagnosis and that you feel comfortable confiding in them.
In your initial searches, keep an eye out for psychologists who specifically mention trauma or PTSD in their skillset.
While you are unlikely to find somebody who specializes in FND, psychologists with training in trauma management are more common and are a bit more likely than the average therapist to understand FND.
Framing FND as a trauma response is often relatively accurate and can help you and your therapist to plan your treatment process.
While you may have additional psychological conditions, any psychologist who won’t accept your FND diagnosis isn’t going to be able to help you in the long term, so lead with that – it’s fine if they need to google the condition, but it’s not okay if they refuse to accept that that’s your underlying issue.
It’s best to learn that first, so my recommendation is to view your first appointment with a potential new psychologist as a first date- but one where you lay all the potential dealbreakers out on the table to see their response.
If the therapist cannot accept who you are, you need to find a better option, and it’s much better to figure that out early so that you can find the right therapist for you without wasting time with someone who isn’t the right fit.
Conclusion: You need to see doctors who accept the reality of your FND for you to be treated properly
Functional Neurological Disorder is not a diagnosis of exclusion and shouldn’t be treated as one.
Doctors are human, too, and tend to dislike things that they don’t understand and can’t explain. Unfortunately, FND falls into that category for too many of them.
While many neurologists are uncomfortable with this condition, it is a neurological one, and you should have a neurologist to assist you in managing your FND.
Finding an FND-aware neurologist can be challenging, but it is your best bet for creating an actual medical team to help you with the long-term management of your FND.
You need doctors who accept the reality of functional/psychogenic symptoms and are willing to explore the cause of any new symptoms you develop.
When finding new doctors of any specialty, they need to respect the reality of your FND diagnosis and be prepared for any symptoms you are likely to have.
They also need to be able to respect your statements of what symptoms are FND-related and help you to manage the issues they are supposed to help you with without being inappropriately distracted by your FND symptoms.
While FND is not a psychiatric condition, seeing a good psychologist and psychiatrist can be useful and helpful for both understanding and managing your FND.
There are psychiatric medications(mainly antidepressants and some antianxiety medications) that have been proven effective for helping to manage FND, even if you do not have anxiety or depression.
While your doctors do not need to have expertise in FND, they do need to accept your diagnosis as real and correct, and partner with you to manage your symptoms and emotions.
As you find supportive doctors, you are building a team to help you manage your health in the best way possible. You deserve to have doctors who work with you and fully accept your diagnosis.
