I woke up one morning with slurred speech, ataxia, and heightened bilateral reflexes, similar to a stroke. After a two-year period of increasingly bizarre behavior and cognitive decline, I was diagnosed with Hashimoto’s Encephalopathy in 2005, two years before Autoimmune Encephalitis had been discovered and given a name.
Fortunately, I worked at one of the best medical schools in the world, where coworkers quickly arranged an appointment with a doctor willing to think outside the box. After tests ruled out post viral neuropathy and brain stem tumors, he went out on a limb and ordered a course of high dose of prednisone. It worked, and I got better!
Not all the way better, though. I still couldn’t handle working. Plus, my husband, and I wanted children which wasn’t possible on the antiseizure medications I was taking. So, I was switched to IVIG, and two beautiful children later was able to return to work for a while.
IVIG is difficult to obtain in Canada, so other immunosuppressant drugs were tried, and unfortunately, I relapsed. My original neurologist was no longer available, and the new doctor was convinced I had been misdiagnosed and that my symptoms were psychiatric.
I’m finally back on IVIG and continue to improve, and although I have some permanent deficits, I lead a pretty normal life. The only difficulty is that my treatments are too far apart, so I live with a continuous recurrence of symptoms including declining cognitive functions. This analogy of the tide is the way I describe my life and the waxing and waning associated with my treatment cycle.
I’ve spent years trying to describe to others what it feels like to live with Autoimmune encephalitis. It’s almost impossible. But I have finally come up with a good description of what a treatment cycle is like.
I have treatment every seven weeks. My symptoms are like the tide. By the end of the seven weeks, I’m treading water. There is no relief. Everything I do, from breathing, to cooking, reading, caring for my kids…is done whilst also treading water. Very tiring and impossible to do a good job, to have patience, to concentrate or to think clearly.
Then I have treatment, and the tide goes out. By the end of the first week the water is barely lapping my ankles. It’s there, and I need to watch but its manageable and life is fairly easy.
Week two, the water is half way up my calves. Still easy to manage
Week three, water is just above my knee. A drag but not difficult.
Week 4, water is half way up my thighs. Getting more and more tired.
Remember, every little thing is done in thigh deep water. Much easier to be still than move but increasingly distracting.
Week 5, water is to my waist. Can do most anything but require rest and everything takes longer.
Week 6, water is up to my shoulders. Pretty much everything is hard. In this analogy, I don’t float. Staying upright requires energy.
And we are back to week 7, where the water is over my head and I am treading.
It’s so predictable that my kids will now ask me where I’ll be in my treatment cycle before asking if I am able to chaperone a field trip or do some day trip.
I hope this analogy helps even one of you describe what life can be like living with autoimmune encephalitis.
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International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.
Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.