The last 2 years of my life seem to have disappeared from my memory. Gone. Holidays, weddings, a funeral, birthday parties, Christmas and New Year. Friends and family keep telling me things I’ve done and the way I’ve behaved, some of which are very embarrassing to hear. It’s just not me.
This is the result of the disease ‘Auto-Immune Encephalitis’, the symptoms of which I was clearly exhibiting without me even realizing. Hallucinations, involuntary movements (which developed to 20-30 movements over 4-5 minutes), insomnia, loss of inhibition, memory loss and finally seizures, none of which I can remember. Apparently I had 2 massive seizures at work (a Secondary School where I teach Physical Education), one of which resulted in the police being called due to me resisting all help. I’m told this was the last of a number of smaller seizures as the disease continued to develop and take hold. The last seizure resulted in me being hospitalized for over 2 months and seen by a number of doctors and specialists, who, through examining a whole host of MRI scans, EEG’s, blood plasma analysis and other tests that I can’t remember. I was eventually transferred to another hospital, where a specialist identified AE straight away, where I stayed and was treated for over 3 weeks.
Lots of my friends and family traveled to see me, none of which I can remember and feel very guilty about admitting to. I have very, very small flashes of shouting inappropriate comments at some female staff and having to apologize the next day, some very small flashes of walking around on other wards in my underwear looking for my ward, again very embarrassing and none of which I can remember. I’ve been told of other embarrassing events I performed, which eventually resulted in me being placed in a room by myself and given sedatives to help me ‘relax’.
I was given all sorts of medicines, went through a whole host of tests and discussions with specialists on how to treat and control this very rare disease, and no-one knew the right answer. It was just a case of controlling the disease from worsening and monitoring my condition very closely. Eventually I was transferred back to my local hospital and continued to have a wide range of tests, blood samples taken every morning to be analysed and eventually, after 3 more weeks was released to go home with a cannular inserted into a vein in my wrist with 24 tablets to be taken during the morning and 12 at night, and received IVIG treatment to boost my immune system every morning at the local hospital.
I am now awaiting a decision from my consultant regarding the next steps. He has to speak with specialists in London as he is also unsure about what to do. I’ve been signed off work until after Christmas, which I also find frustrating as I feel back to 100%, but deep down I know that is the right decision.
I hope this article gives other sufferers of this very rare disease assurance there are other people out there experiencing similar symptoms of this confusing and unexplainable disease that hopefully further research and ultimately a successful pathway to complete recovery.