At some point, you’ve probably seen a neurologist.
Maybe they were the first specialist called to evaluate you in the emergency room. Maybe your family doctor referred you to one. Maybe you sought one out yourself, on the advice of Google telling you they specialize in the brain.
At least 8 have taken a look at my case ever since my cognitive complaints started 6 years ago, and I’ve had positive experiences with one of them. One of eight.
The rest have provoked some combination of hopelessness, confusion and despair that set back my road to recovery from autoimmune encephalitis (AE). I wish I could call this hyperbole, but it’s not. In fact, this experience is shared by many AE patients I’ve spoken to.
To be fair, the field of AE has rapidly evolved in the last couple of decades. It takes time for medical practice to catch up with the research literature, and our current tools to diagnose and treat encephalitis lack sophistication. But whereas the average doctor in other specialties has been respectful and compassionate in expressing their medical opinion to me, I’ve found neurologists to be a generally difficult—dare I say, arrogant—group to deal with.
Or as one doctor friend put it more tactfully: they’re just a cerebral bunch 🧠 😏
The rest of today’s post is part jest, part reality check into the sobering world of living with encephalitis. It’s meant to highlight some of the common challenges shared between AE patients, with a healthy sprinkle of sarcasm. So sit back and crack a smile with me as I explore the 7 ways to piss off your neurologist as a yet-to-be-diagnosed encephalitis patient.
Please note that this satirical piece is simply reflective of my own individual, warped experiences with neurologists. I’d normally be cautious in making sweeping generalizations, but this was a cathartic exercise to help me get over some brushes with medical trauma.
There are good and bad apples in every discipline; however, I’ve heard a disproportionately large number of complaints from chronic illness patients about neurologists, specifically. This blog post reflects that. To those who find themselves frustrated with medical doctors of any specialty, I hope you find some relief in knowing you’re not alone.
1. Pass their screening exam with flying colours.
Neurologists will begin their assessment of you, their new patient, by asking you to perform a series of short tasks. These are designed to test various functions of your nervous system.
- “Touch your right ear with your left hand.”
- “Tell me if this sensation feels warm or cold.”
- “Tap your toes as fast as you can.”
- “Walk forward in a straight line.”
Fail a task, and you’ve perked the neuro’s interest.
Pass the test, and you’ve wasted their time. This is Canada, where specialist waiting lists can top over half a year long.
Surely, a genuine neurological issue will surface during this screening exam which lasts less than 5 minutes. Symptom complaints without any detected screening abnormalities are best considered psychosomatic.
At least, that’s the message that most of my neurologists left me with after I passed their exam. After realizing you’ve failed to capture their medical attention, part of you starts to wish you could go back and fail their exam. In the world of hurried medical professionals, passing a test often means your suffering will go unnoticed and overlooked.
2. Insist that you are a full-fledged human being—not just a series of lab values.
The assertion that everything is in your head doesn’t sit right with you. So you insist that further diagnostic testing be ordered.
The results come back. Blood testing? Normal. CT and MRI scan imaging? Unremarkable. EEG? Typical.
Neurologists love relying on their objective biomarkers of disease, with their willingness to listen to you proportional to the abnormalities found in your lab work. If the results look fine, the neuro will try to send you on your way.
“But wait,” you insist. “My brain is dysfunctional. I can’t live my life like this. Can’t you see this isn’t normal?”
3. Provide pushback when they try to convince you that your symptoms are just stress.
“It’s probably just stress.”
Unless you fit the most classic presentation of encephalitis—acute onset psychosis with no history of mental illness, memory loss, altered consciousness, and presenting in the emergency room with seizures—chances are your neurologist has tried to chalk up your legitimate encephalitis complaints as life stress.
Better yet, they may upgrade that conclusion to depression or anxiety if you plead with them to consider alternate neurological diagnoses. Wrongful diagnoses of mental illness is an unfortunate commonality amongst encephalitis patients. A number of studies report that over 60% of patients are initially hospitalized in psychiatric wards, without the appropriate medical attention.
If you’ve experienced medical gaslighting akin to this, I am truly sorry. It is bewildering, demoralizing, and infuriating. You deserve better.
4. Get a second opinion.
Months pass. Vials of anti-depressants sit in your medicine cabinet. Maybe even some anti-psychotics, to deal with the hallucinations and other unusual symptoms that have cropped up.
At this point, your friends and family are deeply worried about you. Your personality, cognitive, and behavioural changes are too stark to ignore.
Also, you lost your job.
Eventually, you get an appointment to see a different neurologist. You’re hopeful, as you’ve done more research this time to prepare for the opportunity. You wonder if an autoimmune process is to blame for the plummeting state of your health.
“Nope. Your last neurologist already did all the autoimmune testing.” Apparently. How dare you doubt a neurologist.
Your heart falls when you hear this response and realize this doc is no different than the last. With nothing else to lose anymore, you start innocently asking about medications like IVIG. They scoff at you and tell you to stop looking for drugs.
“Nothing is physically wrong with you. Go home and rest.”
You feel as though you’re hanging off the edge of a cliff, with your last hopes of rescue rapidly dissipating.
5. Expect them to play nice with your psychiatrist.
Bam! The next thing you know, you’re waking up in a hospital bed 🏥
What the heck just happened?!
Turns out IVIG brought you back to life after you spent the last few days here in a minimal state of consciousness.
A psychiatrist ran a PET scan that returned abnormal imaging, put together your clinical picture, and diagnosed you with seronegative autoimmune encephalitis.
Maybe you should be alarmed by such a serious illness, but in fact you feel an overwhelming sense of validation. Finally, you have a culprit responsible for the precarious state of your existence.
You’ve forgotten all about neurologists—that is, until your psychiatrist needs one to sign off on the paperwork to get your next round of expensive, life-saving treatments. Drug coverage will likely be denied without another specialist throwing their weight behind the diagnosis.
Long story short, the hospital neurologist on-call is a jerk. Same with the next one a day later. You quickly learn that neurologists think they belong at the top of the medical specialist pecking order.
6. Propose that they read your peer-reviewed journal articles.
“There’s no autoantibody. You don’t have autoimmune encephalitis.”
It’s mind-boggling to me that it’s 2020, and this can still be a defensible conclusion. It is a grave medical oversight for doctors to continue to believe that the lack of a detectible autoantibody means one cannot have autoimmune encephalitis (AE).
Reality check: the first autoantibody implicated in AE, the anti-NMDA receptor antibody, was only discovered in 2007. New autoantibodies are discovered every year; it can take years more for testing for each new antibody to become commercially available. In addition, many AE patients have some normal imaging and lab tests (blood, CSF, EEG) mixed in with the abnormal.
Competent doctors will understand this. They will be willing to entertain a diagnosis of AE based on clinical symptoms and other evidence. Granted, you may need to put the pieces together for them and show them research you’ve read—but a good doctor will at least listen. Neurologists? Not as much. Not in my experience.
Part of me can understand the skepticism to embrace research presented to them by a patient. But it’s another thing when they refuse to learn from a colleague with expertise and success in treating a particular illness, in part because said colleague does not belong to the elite club of neurology.
The psychiatrist presents a well-reasoned, research-backed argument for their seronegative AE diagnosis. But the neurologists won’t have it. They won’t budge.
Seronegative autoimmune encephalitis simply does not exist in the perfect world of neurologists who have never had their eyes personally opened by neurological complications or the accompanying loss of quality of life.
7. Defy their expectations.
You push onwards. You pay thousands of dollars out-of-pocket for your medication. Even though this is Canada, with so-called universal healthcare.
But good news! You are rewarded for your strength, resilience, and determination, with major gains in health over many months. Eventually, you reach a point in recovery where you can find work and get back to living the life you had before AE struck. It’s a new and modified normal, but it’s a normal nonetheless.
You have a follow-up appointment with one of the neurologists who initially evaluated and followed you in hospital. This is one of the better ones, who at least stepped out of the way and let your psychiatrist carry on their work.
The difference between hospital-you and recovered-you is night and day. The medication, the one they were hesitant to support, worked wonders! You’re excited to share what’s occurred since leaving the hospital, and to open their eyes to the lived patient experience of falling ill and subsequently recovering from AE.
However, it turns out they lack the natural curiosity for phenomena beyond their realm of expectation. What a surprise. How dare I assume they would take interest in their patient’s recovery.
They barely bat an eyelash upon seeing your marked improvement. Few questions are asked, and you realize that AE will remain an obscure and limited field of understanding for them. Even though this is a potentially life-threatening condition that falls under their purview to diagnose and treat.
But this disappointment is nothing in comparison to everything else you’ve been through. You were one step away from falling through the medical cracks, and know you’re lucky to now be alive and well. You survived autoimmune encephalitis and that’s what really counts 🎊
Help! I actually pissed off my neurologist.
It happens. You likely didn’t do anything wrong. Notice how all 7 items above are perfectly reasonable actions for patients to take.
Unlike the story in this blog, many encephalitis patients are still waiting for their happy ending.
The primary takeaway here: it’s tough to find appropriate medical care for encephalitis. Most medical professionals, even neurologists, still have a poor understanding of this disease. And our high-throughput medical systems are not designed to deal with complex illness. Medical negligence is not uncommon.
Still, there’s hope in that I see cookie-cutter, textbook AE cases starting to be picked up more readily. The research is starting to trickle down to medical practitioners. But there is still a discrepancy between the portrayal of AE in medical journals, and the lived experience discussed in patient groups. For example, I’ve heard of many “mild” AE cases (besides mine) that took years to diagnose. However, the literature characterizes AE as a severe, sudden-onset disease requiring hospitalization.
If you aren’t making progress with one doctor, please do yourself a favour and seek out another. A good outcome from AE often requires aggressive treatment, and it is relatively common for encephalitis patients to go through multiple doctors before finding one that is a good fit. Your best bet is to find a recommendation from a patient group (Facebook has many) or from a non-profit such as the Autoimmune Encephalitis Alliance and the International Autoimmune Encephalitis Society.
Not all neurologists deserve a bad rap.
After 7 strikes, I’m happy to say that I recently found a great neurologist who has continued my medical care after my psychiatrist went on maternity leave. It took 8 tries, but I eventually found one! At the end of the day, experts are still just people—with some more inclined to help you heal than others.
Keep your head up and find the right ones for you.