Ryan’s firsthand account from the UK of having autoimmune encephalitis

March 23, 2018

Prior to contracting AE, I was a 26-year old male working in the pharmaceutical industry. I had the opportunity to travel to many different places across the world and lived a busy life. I was also a family man sharing life with my 2-year old daughter and better half.

Late last year I contracted AE and have been recovering since. The doctors still haven’t worked out exactly why I contracted it. In my case, this disease caused lots of seizures, confusion, disorientation, hallucinations, short-term memory loss, aggression and more. Although each case is unique, I was lucky for most symptoms to subside once the correct treatment had been administered.

In the early days of the illness, I had experienced a headache, stiff neck and sensitivity to light just before my hospitalization. I had put it down to a case of man flu. A few days later my girlfriend found me having a full body seizure at home and called an ambulance.

I was initially diagnosed with meningitis, however my continued seizures and rapidly deteriorating mental state led the doctors to believe it could be something else. I began to act very strangely – being aggressive towards people, trying to escape from the hospital, and causing havoc on different wards of the hospital. After several MRI/CT/EEG scans and lumber punctures I was diagnosed with autoimmune encephalitis.

My physicians decided to put me into a medically induced coma for 2 weeks. I lost about 1-2 years of memory due to the encephalitis but the most recent memory I have is waking up attached to machines, covered in tubes and needles and not having a clue as to what had happened. I thought I had been in hospital for 2 days, but it had been 4 weeks.

Luckily, I responded to the treatment; the tubes and IVs were removed and my physical and mental abilities returned. I had to learn to perform basic physical functions like walking and using my hands again. After 8 weeks in hospital I eventually returned back home.

I have been left epileptic as a result of the encephalitis. My doctors are unsure whether the epilepsy will be a lifelong symptom or eventually disappear. I still experience up to 3 daily simple/focal partial seizures although this is slowly decreasing. I guess this is a classic example of two steps forward, one step back.

It is helpful to ensure that whoever I am with knows what to do if a seizure occurs. Once people have been given prior warning, they are a lot more comfortable dealing with seizures when they happen.

I am a very impatient person by nature. One of the hardest things for me to accept is that my brain has been through a lot and rest is the best treatment. I am very fortunate to have a great family, friends and understanding company who have offered me continuous support throughout the whole experience.

Currently I am undergoing second-line treatment and tailored rehabilitation to aid my recovery and help me become fit for working again. I have found that gradually reintroducing the things I enjoy doing whilst knowing what my boundaries are and sticking to them has helped me to recover so far.

Thank you to Ryan Omer of the UK for writing your story for us! We wish you continued healing and good health.