I have been engaging with some people with functional neurological disorder (FND) diagnoses. FND is the new name for conversion disorder. They were upset about this thread and how it might stigmatize people with FND.
The last thing I would ever want to do is stigmatize other patients or disabled people. However, it's challenging to figure out how to talk about FND in a way that is not stigmatizing when misdiagnosis is *rampant* and *harmful.*
Furthermore, after digging into FND Hope’s website and list of symptoms (fndhope.org) I can only conclude that if these symptoms are being framed as FND symptoms and differential diagnoses of #MECFS, #EDS, #MCAS, #POTS...
...as well as Chiari malformation, craniocervical instability, atlantoaxial instability, intracranial hypertension, tethered cord syndrome, syringomyelia, etc. are not being considered: onlinelibrary.wiley.com/doi/full/10.10…
Then the "new conversion disorder," i.e., FND, is not ready for primetime. It is going to end up sweeping up a lot of patients who do not have FND and require a wide range of treatments. It will delay accurate diagnosis and subject people to treatments that might cause them harm.
Personally, I’ve been misdiagnosed with conversion disorder or functional disorder essentially five times. My symptoms have always resolved or responded to treatment, once I was accurately diagnosed.
However, complete and accurate diagnosis required extensive investigation which *very few* people living with these symptoms have access to. (More on all that here: link.medium.com/kBqrmlrvv7) 
In the end, it was always hardware.
How common is a functional disorder misdiagnosis? The study design required to get at that question is probably beyond medicine’s current capacities. So, here are some Twitter polls, for what they’re worth.
If you are chronically ill, have you at one point been diagnosed with a functional neurological disorder or conversion disorder?
Was that diagnosis accurate?
If this diagnosis WAS accurate, please reply to this tweet. What treatments helped? What is your function like now?
If this diagnosis WAS NOT accurate, please reply to this tweet with what you were ultimately diagnosed with. What treatments helped? What is your function like now?
If you are chronically ill, have you ever been diagnosed with another functional disorder, psychosomatic disorder, bodily distress syndrome, or “medically unexplained symptoms” (MUS)? Have you been told your physical symptoms were psychological or psychosomatic?
Was that diagnosis or explanation for your symptoms accurate?
If this diagnosis or explanation for your symptoms WAS accurate, please reply to this tweet. What treatments helped? What is your function like now?
If this diagnosis or explanation for your symptoms WAS NOT accurate, please reply to this tweet with what you were ultimately diagnosed with. What treatments helped? What is your function like now?
Has your functional neurological disorder or conversion disorder diagnosis been a source of stigma or misunderstanding?
Has you been able to find treatment for your functional neurological disorder or conversion disorder diagnosis?
Did treatment for your functional neurological disorder or conversion disorder diagnosis help?
Obviously, I don’t have many followers with FND, but I hope these polls and the replies to the above tweets demonstrate some of the challenges people who share similar symptoms and have received functional, somatoform, or conversion disorder diagnoses face.
I think we can all agree that whether or not a functional, somatoform, or conversion disorder diagnosis is accurate or is a misdiagnosis in any given case, everyone who experiences these symptoms faces enormous challenges and is worthy of support and understanding.
Regarding symptoms, let's get specific. The range of symptoms people with FND experience can vary widely, just as they can for all of the other diagnoses I believe *must* be in the differential when any neurologist considers FND.
FND Hope's website lists a large number of symptoms, grouped by type or body system: fndhope.org
Bowel & bladder symptoms: urinary urgency and all of the other urinary symptoms listed on this page are common symptoms of tethered cord syndrome: fndhope.org/fnd-guide/symp…
I had many of these bladder and IBS symptoms (themselves caused by gastroparesis, which caused treatment-resistant SIBO). All of my urinary and GI symptoms were due to tethered cord syndrome and craniocervical instability, and resolved with surgery.
(Prior to surgery, Mestinon, which increases acetylcholine and can help with the symptoms of vagus nerve dysfunction, improved my gastroparesis and some of my other autonomic symptoms.) me-pedia.org/wiki/Acetylcho…
Chronic pain: I don’t have chronic pain, but I recognize that many of these symptoms are not uncommon among people with #EDS and #MECFS. I don’t understand why #Fibro is even on this page: fndhope.org/fnd-guide/symp…
Cognitive symptoms: Many of these symptoms are *a part of the diagnostic criteria* for #MECFS. I experienced confusion, forgetfulness, difficulty thinking, poor concentration, difficulty focusing & completing tasks, and feeling spacey for years. fndhope.org/fnd-guide/symp…
In my case, these symptoms were all caused by a combination of cerebral hypoperfusion, mast cell activation, and intracranial hypertension, which themselves were caused by my craniocervical instability, and resolved with surgery.
Gait & Balance problems: can be caused by *many different complications.* of EDS. Some are the “neuro” complications mentioned in the above Henderson, et al. article. Hip instability/SI joint dysfunction can also contribute: fndhope.org/fnd-guide/symp….
All of my gait & balance problem resolved with surgery and physical therapy focused on stabilizing my spine and correcting SI joint dysfunction.
I also sometimes had start and stop hesitations and “freezing.” These were caused by a combination of craniocervical instability and tethered cord syndrome and resolved with surgery.
However, similar symptoms *returned* after I injured myself in Pilates class. Strain caused my omohyoid muscles to compress my internal jugular veins, bilaterally.
This caused blood to backfill into the transverse sinuses in the back of my head (mine are already unusually narrow), affecting my cerebellum. The result was a kind of freezing, plus all kinds of horrible motor symptoms. It resolved w/ physical therapy for my omohyoids.
Headaches & migraines: I’m not even sure what to say about this....my headaches resolved with diagnosis and surgery. I actually am *less* prone to headaches now than I have been in my whole life. fndhope.org/fnd-guide/symp…
Involuntary movements: Restless leg syndrome—I had this! It was due to my tethered cord and resolved with surgery. fndhope.org/fnd-guide/symp…
Paralysis & weakness: I had intermittent paralysis that I’m pretty sure would not have passed the smell test in a standard neuro exam. It also resolved with surgery. fndhope.org/fnd-guide/symp…
Functional seizures: I was diagnosed with pseudoseizures, but this was probably due to abnormalities in cerebral blood flow and were generally orthostatic. Glad that this page mentions syncope and cerebral vascular causes—an improvement! fndhope.org/fnd-guide/symp…
Only through extensive investigation did I find the underlying causes of my abnormal cerebral blood flow: bilateral transverse sinus stenosis, entrapment of the jugular veins by my omohyoids, craniocervical instability. Since treatment, I no longer have “pseudoseizures.”
Sensory changes: Wow. Nearly everyone with severe ME is sensitive to light, sound and/or touch. People with MCAS and MCS can be exquisitely sensitive to smell. fndhope.org/fnd-guide/symp…
All of my sensory sensitivities resolved with my craniocervical fusion. Some of these sensitivities can also respond to MCAS meds.
Sleep disturbances: These are the one category of symptom I never had, but sleep disturbances are very common in #MECFS fndhope.org/fnd-guide/symp…
Speech problems: This is one category of symptom that I do not think is common in the alternative diagnoses I mentioned way up top. fndhope.org/fnd-guide/symp…
I’ve had transient expressive aphasia in the past as well as an inability to speak because I could not pass air fast enough to generate sound, particularly when “crashed” due to muscle fatigue. Again, everything resolved with surgery.
Also, difficulty swallowing food (dysphagia) can be a symptom of Chiari and CCI.
Visual changes: Diplopia is a common symptom of intracranial hypertension, Chiari, CCI, as are headache and photophobia. I did not have obvious visual changes until my intracranial hypertension became severe (after my thyroidectomy and before my fusion). fndhope.org/fnd-guide/symp…
However, I could not read for 8 years because of the constant pressure behind my eyes. The act of scanning a page, left to right, would give me horrible headaches and vertigo.
I later found that my optic nerve was being compressed by excess cerebrospinal fluid in my optic nerve sheath. This is a sign of intracranial hypertension. medium.com/@jenbrea/path-…
The first neurologist who diagnosed me with conversion disorder might have seen this if he had bothered looking at the MRI, rather than just reading the radiology report.
In sum, after reading the FND Hope website, I cannot in good conscience promote an FND diagnosis for anyone who has not undergone very careful differential diagnosis, which is rare––far more rare than any neurologist realizes.
I am especially suspicious of an FND diagnosis in a patient with these symptoms if:
– their trigger was infectious or involved a physical trauma
– they have a connective tissue disorder
– they have MCAS
– they are not getting better w/ recommended treatment
– their trigger was infectious or involved a physical trauma
– they have a connective tissue disorder
– they have MCAS
– they are not getting better w/ recommended treatment
In saying all this, I am sure I will upset a lot of FND patients. However, I want to try to draw a clear distinction between supporting people with FND and criticizing the way that FND is currently diagnosed.
I absolutely respect people with FND diagnoses and know full well that there can be many different causes for the same symptoms.
99.99% of people who get an FND diagnosis are *not* being evaluated for most of these conditions, and particularly not for the neurosurgical ones. Given how FND is being framed, I am not surprised that there is rampant misdiagnosis.
I hope FND organizations and researchers can do the work to contend with this problem. Until then, I consider an FND diagnosis without appropriate investigation, especially in people with the above histories, dangerous.
