What is anti-NMDA-r encephalitis?

Anti-NMDA-receptor encephalitis is the type of encephalitis that I suffered from in 2011.

There are many different articles which explain in depth what NMDA actually is, but I have found an easier way to explain it.

However, for the purpose of giving a proper explanation, here is what the ‘Anti-NMDA Receptor Encephalitis Foundation, Inc.’ says:

Anti-NMDA receptor encephalitis is a disease occurring when antibodies produced by the body’s own immune system attack NMDA receptors in the brain.  NMDA receptors are proteins that control electrical impulses in the brain. Their functions are critical for judgement, perception of reality, human interaction, the formation and retrieval of memory, and the control of unconscious activities (such as breathing, swallowing, etc), also known as autonomic functions.

Antibodies are an important part of the body’s defense system. All healthy individuals produce antibodies against viruses, bacteria or tumors. Under normal circumstances, the body prevents production of antibodies against its own (‘host’) tissues. In some individuals, however, antibodies that target the host may be produced. When this occurs the patient is said to have an “auto immune” (i.e., originating from one’s self) disease.

In anti-NMDA receptor encephalitis antibodies are generated against NMDA receptors and go on to attack these receptors where they are found in their highest concentration: within the brain.  The reasons why anti-NMDA receptor antibodies are formed is not yet fully understood.

Anti-NMDA receptor encephalitis may be associated with a tumor, and may therefore be referred to as a “para (i.e., associated with) neo (i.e., new) plastic (i.e., growth”) disease.  If a tumor is found, it is most often a benign (i.e., not cancerous) tumor of the ovary. The most common tumor type is a teratoma.  However, unlike other tumors, it may contain many different types of body tissues (including brain tissue!) A tumor is more likely to be found in young women who become sick during their childbearing years, and is less likely in very young (age 0-10) and older (>50 years) individuals.  Anti-NMDA receptor encephalitis affects more women (80%) than men (20%). Tumors may be found in men. When these occur they are usually found in the testes.  Other types of tumors that have been associated with anti-NMDA receptor encephalitis include lung cancer, thyroid tumors, breast cancer, cancer of the colon, and neuroblastoma.

The role of the tumor in producing Anti-NMDA receptor encephalitis is not fully known and is the subject of ongoing research. What is known is that most tumors associated with anti-NMDA receptor encephalitis contain neural tissue (tissue containing cells identical to that found in the brain), and NMDA receptors. It is presumed that antibodies are initially formed against NMDA receptors found within tumors, and then attack similar-looking receptors in the brain producing the symptoms and signs associated with anti-NMDA receptor encephalitis.

Tumor removal is a very important part of treatment.. Patients who have a tumor that is removed, recover faster and are less likely to experience a recurrence (or relapse) of their disease than those in whom no tumor is found. All patients suspected of suffering from anti-NMDA receptor encephalitis should be screened for the presence of tumors. This is usually done with imaging (CT or MRI) of the chest, abdomen and pelvis. Women should also receive an ultrasound of the ovaries, and men should receive an ultrasound of the testes. Even after removal, tumors can regrow. Therefore, people with anti-NMDA receptor encephalitis should be checked periodically for the presence (or recurrence) of tumors.

In many people with anti-NMDA receptor encephalitis a tumor is never found. This may be because the tumor is too small to detect with imaging techniques, or because it has been destroyed by the immune system, or there is no tumor.  In cases not associated with a tumor, it is not known what causes anti-NMDA receptor encephalitis.


And, here is what The Encephalitis Society says:

In summary, NMDA Receptor Antibody Encephalitis is a recently identified autoimmune disease that causes psychiatric features, confusion, memory loss and seizures followed by a movement disorder, loss of consciousness and changes in blood pressure, heart rate and temperature. The disease can respond well to various therapies that dampen down the immune system and the removal of an underlying tumour if one is found, but improvement is often slow.

I, on the other hand, have a different way of explaining it.

For some reason, your body has started to attack itself, whether that be due to it trying to fight off a growth (teratoma) which includes brain cells or for another reason. This means that the body produces antibodies to fight off the growth, which in turn attack the brain, leading to inflammation. This means that any part of the brain that is inflamed will lead to different symptoms. Personally, I had swelling in the brain step and left frontal and temporal lobes which meant that I stopped breathing, my temperature was out of control and I have had problems with memory, personality and balance. Depending on where the inflammation occurs determines the effect of the brain injury.




Flow Chart - Diagnosis and Treatment

Sometimes the best way to understand is by reading a story.

But, when will I get better?


Disclaimer: This site is maintained by a brain injury survivor and not a medical professional. Although all efforts are made to ensure that content is factually accurate, the author is not responsible for how the information is used. If you have any concerns about your health, seek medical attention from NHS Direct, your GP or your local hospital, or in an emergency call 999.

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