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.
I know exactly how you feel about finding a neurologist,I’ve had MS for 8 years and just recently I have decided to change neurologist after 2 years of seeing the one I have. I know you read my post about having a hiccup and that was the icing on the cake so I’m still looking and I’m so glad you found one you like! If you happen to be in NC please let me know who it is! If you happen to be a patient at the Cleveland clinic, lucky you!
Hello from Texas! I definitely encourage people to keep looking if they’re not confident in the medical care they’re receiving. It’s so easy to be dismissed and then end up losing out on your quality of life. I hope you ultimately find someone you feel confident in! Cheers
Took 12 years and multiple “specialists” in different fields before diagnosis of AE. Of course I was doctor-shopping, non-compliant, had somatiform disorder, needed counseling, and so on. If you’re not crazy when you begin this journey, the doctors certainly send you over the edge. Thank goodness for an unflagging partner, a supportive PCP, and a couple of wonderful friends. I understand how being told you have a serious, rare, incurable disease can be so liberating!
Good for you for sticking with it and not giving up until you found answers! It seems that the most persistent of us finally find respite; but I aim to be part of creating a future where the struggle to get AE treatment and diagnosis does not rival the magnitude of suffering with the sickness itself. In the meantime, we AE patients need to stick together thanks for finding my blog and commenting! Wishing you better health with your upcoming treatment, and quick recovery.
I found that the best course of action is to document all the notes from each doctor or other health practitioner and keep a log. Share this log regularly with the team via email (if possible). Otherwise, have the latest notes ready to recite it for each doctor. It does require a lot of patience and make sure that the doctors listen and engage with your notes. Have definite follow-ups. Both for you and for the doctor. Make sure you follow up and then report back your finding from the other doctor/practitioner. The best way to manage your health is to manage the process and your narrative. Initially, the doctors may be a little impatient but the smartest ones realize what you are doing and they work with you because you are on the task and are not wasting their time. Good luck with your journey and praying for your fast and complete recovery!
Thank you for your comments and good wishes, Sabir! Yes, those are all great suggestions and I have had to learn to do these things the hard way (and my mom did too back when I was too sick to do the advocating for myself). Even still, we encountered many doctors that were too stubborn to work with each other or even just listen to the facts of what was going on with my health. Some of that may have just been the culture of the doctors in my region. After spending more time in this space, it seems to me that the UK and US are doing a better job of recognizing and treating encephalitis compared to many other countries. I look forward to the research becoming more widely known amongst doctors, and to when places like Canada catch up! Cheers to you and your daughter, keep in touch 🙂
Two weeks ago I met with a doctor at MASS General (Linnoila) who regarded me with such clinical coldness I felt immediately reduced to points of data. Even with a letter from my psychiatrist supporting the fact that he indeed thought I had limbic encephalitis and with at least a small collection of odd antibodies (but none high enough for her liking) she suggested that this might be psychiatric. How do I know it is not? I am a trauma therapist. I could not manifest my symptoms if I tried with pixie dust.
It was hurtful and invalidating and I spent a week in bed depressed in absolute tears. I am writing a collection of essays on the matter and hoping to eventually go up against EPIC, the bs records system here in the States that makes life a living hell for people who are hard to diagnose (look up anchoring heuristic).
I liked your post on Facebook. I hope you keep writing. You have a strong story to tell and I’m grateful to read it.
Ugh, it makes me so furious to know that these types of things continue to happen. It’s my hope through continued advocacy and awareness that all the misperceptions surrounding AE will be reduced over time (and sooner rather than later). It can be so damaging to have experiences like that, not to mention the negative impact of being blocked from accessing appropriate medicines/medical care.
Thank you for sharing your story and keep up the good fight. I hope you find the medical term you deserve to have, and find your way to a place of recovery. Hang in there!
A friend just shared your blog. I felt as though it was the story of my son who is 21. We live in Canada, finally after 4 years and several trips to a Neurologist in the US are getting treatment for his AE at Sunnybrook Hospital. I am amazed that a psychiatrist here in Canada did a PET scan, I would love to know who that was as I am in touch with other parents with kids with AE (diagnosed through the US through the Cunningham Panel) that reside in Canada. Your experience and insight would be so helpful to us. Let me know if we could connect. Thank you for bringing your story to light, this will help so many people. I admire your determination and tenacity. You are so right that without that in Canada, you will not find the right doctors to treat. Thank you so much for this.
Thanks for your comment! I have just sent you a message directly.
The gaslighting and ego’s are astonishing as you travel further into the abyss of an undiagnosed AE presentation – as an parent advocate in Canada I know you are fully aware of the challenges here – as you have indicated this is where you initially reached out for help . Thankfully my daughter is being treated now (just this year) – but it has been 5+ stuck in Psych with numerous long hospitalizations. We are still have a long road ahead.
I have teamed up with another Canadian Parent who I will be eternally grateful for assisting and passing on her knowledge and most importantly clinical contacts to move us forward.
I just found this Blog through the Alliance – thank-you for sharing. I really do think there are a many people in Canada that are trying to find a path forward but are isolated in their own journey’s – it takes a tremendous fortitude and research – as you know, to source Doctors that have knowledge to execute the testing (and we like you had to go the US for Lab testing Cunningham Panel, we also did the Mayo Clinic Autoimmune Serum). I was also in Contact with Dr. Brian Fallon’s team a Columbia Medical Health Centre (Tick Borne Disease Centre).
This other Mom (both our Kids are in their 20’s) would really be interested to know what clinical team eventually treated you in Canada. We need keep on the front lines and understand where the expertise is here. My email is provided. I’m so impressed with the path you have forged fighting for your health and your generous spirt for sharing – even through the fog of this terrible disease.
I appreciate your kind words! I’ve now sent you a message directly.