Note: this post is the second in a series in which I answer how I finally got treated for autoimmune encephalitis (AE) of the seronegative—or possibly GAD65—subtype. Treatment started 5 years after I first got sick.
To get up to speed, you’ll want to read Part 1 of the series here. Once again, here’s my warning that none of this is medical advice; I’m just a pretty jaded, battle-wearied patient giving voice to the non-textbook AE journey. So if you’re new to this, fear not. Most diagnosed today will not encounter the same degree of challenges I’ve had.
But some will. I write this largely for the sizeable minority of you who have fallen into the medical cracks and could use some guidance and hope. Those simply with the morbid curiousity to know more about the failings of North American medical systems, you’re welcome here too.
What about interdisciplinary care?
The first time I recovered in 2019, all I knew is that multiple neurologists failed me and 1 psychiatrist saved me. I had no understanding of what interdisciplinary care could offer an encephalitis patient until the middle of relapse #1, when you-just-have-adult-ADHD neurologist sneered at my claim that the non-sick version of me is high-functioning. She said I should have gotten neuropsychiatric testing done to prove this during the period in 2019 when I “claimed” to have recovered.
Gut punch.
I never knew neuropsychiatric testing (with a neuropsychologist) is a standard recommendation for AE patients until I sought out medical care in the US. I also never knew that you can go to an insured, in-network hospital in the U.S. and later get billed for visits from an out-of-network doctor, to the tune of $14k for nine ~ten minute visits. My thanks for this lesson learned goes to the cardiologist who had no suggestions for my autonomic instability, other than to ride it out and wait for the plasmapheresis to start working. The surprise $14k bill, which took 14 months of phone calls + snail mail to sort out, was a gut punch of a different kind—but I digress…
I’ll pick up on the rest of my personal story below; but first, let’s talk more broadly about the concept of interdisciplinary care.
In theory, the term interdisciplinary care implies that multiple realms of expertise will pool their suggestions together, collaborate as a team, and execute a plan that will produce the best patient outcome. But in practice, I’m not so sure that’s how things pan out. From what I can tell, smooth-functioning interdisciplinary AE care teams are rare in 2022.
Scenario 1
What I’ve seen happen more often than not is that you end up with a hodgepodge of contrasting personalities that offer fragmented recommendations based on their siloed lens of expertise. Some of these recommendations may stand in contradiction to one another. What then? Either the most assertive personality OR the specialist highest in the pecking order ends up calling the shots, with the other team members learning to fall in line lest they stir the pot of hospital politics. As to the treatment plan you get, the nature of it will be the product of a team’s habits and unique medical culture moreso than what might be determined after a thorough review of the literature. Hopefully it works out. In severe or refractory cases… unfortunately, it might not.
Scenario 2
Alternatively, it becomes the blind leading the blind—AE is rare after all, with limited real-world experience to go around. In that case, the default course of action is usually to follow the recommendations published in medical journals. Makes sense; but what’s actually there? Limited procedural detail in terms of things like dosing, timing of administration, and decision algorithms. Worse still, the overall quality of AE data is poor as judged by the leading European experts of the space. I watched the Treat AIE Networking Conference last month in which it was made crystal clear that after 1.5 decades of study, we don’t even have conclusive evidence that administration of first line therapy vs. no immunotherapy improves patient outcomes. What?! Isn’t that the foundation of this whole field?
One of the expert working groups spent upwards of an hour (seemingly closer to 2 hours) discussing the matter before coming up with their final recommendation that, despite the high risk of bias in all the papers they evaluated (every single one given a poor rating of “critical”/4 out of 4 on their Risk of Bias scale) yes, administration of immunotherapy vs. no immunotherapy improves final disability. The fact that this is still debatable in 2022 gives you an idea of where the field is at.
The world of practicing medical doctors is not built to reward those willing to take risks (for good reason, on the whole). An underserved and bitter patient might conclude that on the contrary, it’s a world where doctors flex their competence in terms of how rigidly they can apply research-backed practices—not a very fruitful endeavour in the AE field, where one could (absurdly) argue we don’t have concrete data and randomized controlled trials to justify treating patients with immunotherapy at all! and not be technically wrong.
Practically speaking, this means an interdisciplinary team with limited AE experience (read: the random assortment of medical providers the average AE patient will come under the care of, unless they seek out individuals with a certain treatment style or a centre specifically known to treat AE patients) will tend to default to the most conservative treatment plan. The plan that everyone more or less agrees represents a minimum standard of care; the one that won’t be thrown under the bus by that one skeptic asking his/her colleagues where’s the evidence we should do that?
Is this the approach that’s best for the patient? Maybe; maybe not. Some—especially those treated early—make wonderful recoveries on short courses of first-line therapy. But the answer is a resounding most definitely not in the case of me and the sizeable minority of patients I mentioned this post is geared towards.
Scenario 3
Back to my story: I would have been set in 2019 had I just been made aware of the value of a neuropsychologist. I got my immunotherapy from the angel psychiatrist, recovered completely, and essentially dashed off on my merry way with the belief that I was permanently fixed.
Except I had no way of proving that I recovered. Not in the eyes of skeptical neurologists. The ilk of neurologist prone to getting stuck on the fact that we lack randomized controlled trials to prove things that, for practical purposes, the rest of us already know (e.g. that administration of immunotherapy vs. no immunotherapy decreases poor outcomes, as mentioned above).
In my view, the primary benefit of interdisciplinary care is that you get ideas for recovery coming at you from multiple perspectives. That was what I got from one lauded AE team in 2020, whose (lack of) immunotherapy recommendation prolonged my first relapse but whose recommendation to take a stimulant medication opened my eyes to the benefits of symptomatic treatment.
In other words, the benefit is in different individuals brainstorming possibilities moreso than the execution of comprehensive solutions.
If I were to go back in time to 2019, I’d like to think that had I seen one more competent doctor on top of my overworked psychiatrist, neuropsychological testing (for a brain injury no less!) would have been put on my radar. But you also have to be careful about too-many-cooks-in-the-kitchen and letting poor cooks into the kitchen in the first place—two scenarios which can stifle meaningful and efficient progress in a system that loves to play wait-and-see. Going to an established interdisciplinary AE team may in some cases not be any better than taking your own survey of the territory (the AE Alliance’s Recovery Toolkit is a great place to start), and finding one knowledgeable, skilled, and collaborative-minded doctor who will help facilitate referrals where their domain of expertise ends.
The best AE doctor I’ve worked with in 7 years was the neurologist who trained under the famous Brain on Fire doctor, established a track record of successful patient outcomes, earned the right to operate relatively autonomously, and executed thoughtful decisions after taking into account what the patient/caregiver wanted. Earlier in her career she ran into the too-many-cooks-in-the-kitchen phenomena, learned her way around all manners of psychiatric and epileptic medications, and became skilled at piloting the care of AE patients herself. But even she could recognize she didn’t have ALL the answers. At our best it was clearly her and I co-collaborating to make things happen—rather than top-down, paternalistic decision-making from doctors muddling through their assignment yet emphatic they know what’s best. I have no idea why her approach is so rare.
Sometimes collaborating with one competent, sensible doctor can trump just showing up at the door of one of the big-name interdisciplinary care teams out there.
Where should you actually go for treatment?
The short answer: I don’t know where or to whom you should go. You can take a look at doctor lists from the AE Alliance or the International Autoimmune Encephalitis for ideas, or ask fellow patients who they’ve had success with. But for non-textbook patients, it often comes back to a game of trial and error.
Despite my involvement in patient groups and having my eyes and ears open for years, I still don’t have a one-stop-shop recommendation for people who reach out to me with questions about treatment centres and doctors. The most promising ones are hard to get into and tend to be overworked, a fact that’s now left me back in the care of a local specialist rather than Brain on Fire-trained doctor. (Which was stressful at the time to deal with but actually turned out for the better. Local doc is a neuro-oncologist with more experience using Cytoxan, the chemo infusion I recently wrapped up.)
Furthermore, a lot of it comes down to the nature of each case and individual patient-provider fit.
What I eventually learned to do is take matters into my own hands, knock on a lot of doors, and patch together my own team to cover 5 bases:
- Immunotherapy
- Symptomatic treatment
- Rehabilitation support
- Emotional support
- Documentation (for work or school, needing to establish care with a new doctor, and proving relapses and remissions)
In hindsight maybe those broad buckets of care seem obvious; but until last year they weren’t at all obvious to me. So I hope that framework just provided a shortcut to someone out there reading this. If you’re getting smashed around by the speed bumps just as I and so many others have before you, know that it’s okay to look beyond your current circuit of doctors. You may want to explore your options and consider whether your bases may be better covered elsewhere.
In the beginning, it’s natural to trust that the insert-specialist-here will get things straightened out. Psychiatrist, rheumatologist, neurologist… or better yet, the neuroimmunologist. It sounds like they would know all about the interplay between the nervous and immune systems, right? But the reality is that our society tends to place too much emphasis on a medical provider’s title. You come to realize that the views of that one specialist you meet doesn’t represent the views of a single, cohesive discipline—especially once you consider the variation between residency and fellowship training programs, how little of our AE knowledge has been definitively established, and how much a provider’s personal value system and subjective risk/reward calculations factor into their judgment calls.
So if you know in your gut you’ve reached a dead-end with one doctor, that doesn’t mean you’ve reached the end of your road. It just means you may need to push forward to get your bases covered elsewhere, perhaps through unconventional or creative means.
Immunotherapy? Last year I had to run around between 3 specialists to receive plasmapheresis, Rituxan (rituximab), Actemra (tocilizumab), and IVIG, owing to a mixture of insurance issues, geographical restrictions, some bureaucratic nonsense, and drug shortages.
Symptomatic treatment? Turns out that was most convenient through my family doctor.
Rehab support? Went to a speech language pathologist experienced in various forms of cognitive therapy.
Emotional support? Thank you friends, family, Squishmallows, and a therapist trained in EMDR (10/10 would highly recommend).
Documentation? Pleaded with a former doctor to order a follow-up PET scan to compare against the 2019 one used to diagnosis me; privately paid for an IQ test before insurance was in place later to do the full (and more expensive) battery of neuropsychiatric testing. The private testing may seem like overkill, but years of having to stand trial against dubious doctors tends to breed hypervigilance.
This sort of mess requires more energy to research and coordinate than what you might put into a full-time job. Rabbit holes, unreturned calls, cancelled appointments, staff dispensing the wrong information, new patient intake forms, rude receptionists, policy changes, hours of hold music, a surprise $14k bill, pharmacists questioning why you’ve filled prescriptions at 3 different pharmacies, seeing your specialist in another country, COVID testing by an external lab not being accepted at the hospital you’re to be admitted at, and on and on and on… anyone who’s trod a similar path knows this exhaustion, not to mention the anguish in recognizing how many of the mountains are senseless BS. Like dealing with inept office staff who fumble your messages long enough to cause serious infusion delays, resulting in an unfortunate trip back to the emergency room. That’s what happened to one of my hospital roommates.
To think back on all of the extra details is maddening, until I remember I’ve been more fortunate than many placed on the delayed diagnosis, seronegative, and refractory AE path. I’ve actually tasted what full recovery is like. And in my remissions I built a humble safety net whose tears were filled by the kindness and love of others. That’s what enabled me to dedicate month upon unemployed month to solving my personal AE maze. Without that net, without peer support, without you, the suffering of this journey would total so much more. Nevermind the fact that it would still be ongoing.
But I know many of you lack the same privileges, which is why I feel compelled to share the journey I’ve gone through. I want the people who could benefit to know the important lessons, themes, and patterns that took me seven lost, brain-inflamed years to discover.
If it speaks to you, take my knowledge and run with it. Ask me questions. Join support groups. Ask those people questions. Read medical journals if your brain will allow. Get resourceful. Empower yourself. Foster relationships with the doctors who listen. Don’t burn bridges. Advocate hard for yourself or your loved one.
Use the greater abundance of information out there now—greater than when I was diagnosed in 2019, and loads greater than when I got sick in 2014—as your shortcut to a favourable outcome. Keep knocking down those doors. Don’t give up. If I stopped at neurologist #11 I wouldn’t have made it to #12, the one who stopped me from relapsing twice.
I’m telling you all the things that would have been helpful to hear in the moments I doubted recovery was possible. While I don’t know exactly what the future holds—I still have a lot of healing left to go—I know that the todays are brighter when I believe in a better tomorrow. Hope is a powerful thing. Don’t underestimate the value in having a dot on the horizon to aim at.
In other news, there are a couple exciting educational opportunities coming up. One is AE 101 with the AE Alliance on May 14 (email info@aealliance.org to register); the other is the EUROIMMUN Neuroimmunology Event on June 15. Getting a handle on some of the science behind encephalitis is a major key to becoming an effective advocate for yourself. And if you could use some additional guidance you can find me on Facebook, Instagram, and Twitter. I can’t promise a quick response or that I’ll have the right background to answer your question, but I try my best to help where I can.
Now get out of here and take action on whatever moves you closer to that dot on the horizon 🙃.
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You may be interested in the following posts next:
The 7 Stages of Receiving Medical Treatment, as Told by a Rare Disease Survivor
The Real-World Challenges of Surviving an Autoimmune Encephalitis Diagnosis (A Rant)
What happens when your autoimmune encephalitis treatments aren’t working?
World Encephalitis Day: Where are we in 2022?
The 7 Ways to Piss Off Your Neurologist, as Told by an Encephalitis Survivor
Relapsing… again. Autoimmune encephalitis round #3: Let’s go 🥊🥊🥊
I am a nurse case manager of 30 years who got autoimmune encephalitis 5 years ago, it was then that I found out a lot of medical staff did not practice like I did. Nurse case managers , Utilization management nurses and social workers can often tell you the in’s and out’s of insurance coverage. Nurse case managers and social workers should be knowledgeable about resources that can assist in rehabilitation and recovery but many of them are uninformed about autoimmune encephalitis and it’s course and the needs that patients and their families may have. Unfortunately this has led to families and even patients doing their own research to find the resources needed. I applied for social security disability, I found out that a disabled individual was entitled to a reduction in property taxes, the student loans I took out to help pay for my children’s college education were discharged. I was only able to achieve this because of my previous job and persistence. I needed help from my husband to navigate websites but was able to get it done. That does not mean that I don;t repeat myself, I do, I forget things if several weeks have gone by. I remain disabled. There continues to be an ignorance about AE and it’s effects. I must thank spell check as I typed this message.
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I hear you! On the whole I have found nurses wonderful but their knowledge of the specific needs of autoimmune encephalitis patients can sometimes be lacking. It seems the people who get the furthest are those with personal knowledge of how the healthcare system works, or those with the right connections to people “in the know.” There’s a lot of legwork for patients/caregivers in order to figure things out, but I’m grateful for the various patient groups out there that have helped me in navigating that process. I know you’ve shared your knowledge with so many, Mari – thank you!