August 6, 2018 | Barbara Vujaklija, RN
I would like to go back to my nursing days to discuss a few terms that seem to get confused on a fairly regular basis among autoimmune encephalitis patients and their loved ones. Nurses have always been translators. So, lets translate.
What is considered an infection? If you cut yourself and a sufficient amount of the bacteria on your skin gets inside your blood you may or may not get a bacterial infection. Likewise with viruses if a person with a cold or the flu sneezes on you and the droplets containing the virus get through your mucus membranes you may or may not get a viral infection, such as a cold or the flu. Parasites and fly lava may also cause a localized or systemic infection. Whether or not you get an infection after an invasion of harmful microorganisms depends on a variety of things that include the number of microorganisms, the strength or virulence of the microorganisms and your immune system’s ability to fight off infection.
Let’s break down some of the language. First there is a pathogen which is simply a bacterium, virus, or other microorganism that can cause disease. If it enters the body the pathogen is called an antigen which is regarded as a threat by the immune system and is capable of stimulating an immune response. When the antigen enters the body the immune system produces antibodies against it. An antibody becomes attached to the antigen and renders it harmless or can destroy it.
When talking about infection in reference to Autoimmune Encephalitis (AE), it is important to remember that AE is a disorder of the immune system not an infection. The body spontaneously produces antibodies that attack the brain causing inflammation which then produces the symptoms of AE that we are all familiar with. Encephalitis can be caused by viruses and bacteria but this is infectious Encephalitis and not autoimmune encephalitis.
To make this easier, I encourage you all to watch this 4 minute video, A Walk Through Autoimmunity, as it explains what autoimmunity is in a very ‘user friendly’ way.
With the exception of research showing that the Human Simplex Virus (HSV 1) has shown a correlation with anti-NMDAr AE, autoimmune encephalitis is not caused by any of the microorganisms mentioned in the definition above. It should be stated here that there are a few documented cases of isolated organisms being present prior to the anti-NMDAr antibody being created by the immune system creating anti-NMDAr AE.
You can read about these studies under the heading: Viral disorders can trigger synaptic Autoimmunity
on our website. To quote Dr. Josep Dalmau, “We await new findings in research around this topic.” (IAES updates this section of the website as new information is discovered).
The take away is that we are not infected with AE our bodies are malfunctioning. In a small number of cases an infection may cause anti-NMDAr AE by triggering the immune system to malfunction. But generally speaking, infection has nothing to do with antibody mediated autoimmune encephalitis.
LOST IN TRANSLATION
Some of the more common terms you may hear in relation to AE are medical terms for the symptoms. For instance Dysphagia Is the medical term for the symptom of difficulty in swallowing. Dyskinesia refers to a category of movement disorders that are characterized by involuntary muscle movements, this may also be called Myoclonus. including movements similar to tics or chorea and diminished voluntary movements. Dyskinesia can be anything from a slight tremor of the hands to an uncontrollable movement of the upper body or lower extremities. Dis-coordination can also occur internally especially with the respiratory muscles and it often goes unrecognized. Myalgia, the prefix my(o)-, which means ‘muscle’, and the suffix -algia, which refers to pain or a painful condition. Muscular pain or ache in a muscle which may be the result of injury, inflammation, overuse or inappropriate activity. Hallucinations are visual, audible or physical illusions that a person sees, hears or feels that is not real. Delirium on the other hand, is a condition of severe confusion and rapid changes in brain function. Another psychological term you might hear is Paranoia which is characterized by delusions of persecution, unwarranted jealousy, or exaggerated self-importance. The most severe of the psychological symptoms of AE are catatonic, a state of muscle rigidity and near unconsciousness and coma.
Some of the terms you will hear are related to the treatments we take. Hypertension is high blood pressure. Blood pressure is the force of blood pushing against the walls of arteries as it flows through them. Steroid use can often cause this, also Tachycardia abnormally rapid heart rate, usually taken to be over 100 beats per minutes.
Some other general terms include Encephalitis which is active inflammation of the brain versus Encephalopathywhich indicates a structural change in the brain. Although often the two are used together. Stroke, CVA and TIA can be confusing. Stroke and CVA which stands for Cerebral Vascular Accident are actually the same and are caused either by a bleed or a blockage in the vessels of the brain. A TIA or Transient Ischemic Attack or mini stroke is different in that it leaves no permanent damage in the brain.
Here is a downloadable glossary of common words you are likely to come across. We hope you found this helpful and are not feeling so ‘lost in translation’, as you were before.
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.