Anti-NMDA Receptor Encephalitis Lived Experience – Michele’s Story – Part One

Below, Michele shares her son Ross’ lived experience of Anti-NMDA Receptor Encephalitis. This includes the initial symptoms and the effect on Ross’ family.

If there is one thing I’ve learnt as I have got older is the fact that we cannot control everything that life throws at us. I realise that we can only keep hope and faith but along with that we can and must fight for our loved ones when they need us most and always, always judge our own instincts.

This narrative is written purely from my perspective, as a mum, taken from notes which I kept during our son, Ross’ illness with Anti-NMDA Receptor Encephalitis and from the constant memories which run constantly in my thoughts. It does not include all the experiences that Ross’ girlfriend, dad, sister, younger brother and all our/his friends went through and witnessed. Each of them have their own story, however what we all have collectively is the knowledge that our love for Ross kept us going along the same path to get the best care for him. I can never thank each of them enough for the love they gave me and Ross.

Ross is our firstborn son who works hard and has always embraced life with no problems. In 2014 he was 29 years old and he was living in Norwich with his girlfriend and running his IT Company that he set up with his university friend which was going well. Ross was always one for learning new skills, he could memorise anything he read and always wanted explanations and answers as to how things worked.

We are a close family and we had never really had to worry about Ross but that all drastically changed in 2014. At that time my dad was diagnosed with mesothelioma, a terminal illness, and he needed so much support. Ross, at that time (January/February/March), was travelling a lot between Norwich and Kent and working long hours on a project. Ross visited us and also went to the hospice to see his grandad. Ross seemed a little tired and distracted but I assumed it was his hectic work schedule and seeing his grandad so ill and did not dwell on it.

In April following my dad’s passing I recall Ross being very distant at my dad’s funeral and it was his girlfriend who had to get him organised with transport. Unusually for Ross he was not being very proactive.

There was also an incident about this time when Ross was in Kent and he decided he had to go back to Norwich to collect a suit for a meeting, he subsequently arrived back in Kent without it and had to go buy another. I thought it odd but just thought it was his work load and the stress of seeing his grandad so very ill.

In May 2014 Ross complained of feeling below par with a sore throat and tongue and mouth ulcers on the roof of his mouth and lack of appetite. He wondered if he’d burnt his mouth on a hot drink but did not want us making a fuss.

We had a phone call in mid May 2014 from Ross to say he was feeling very ill with diarrhoea and sickness in the hotel near where he was working. He did not want us to go to see him in case we caught it from him. Ross also experienced peeling skin on his hands and soles of his feet and a rash on his elbows, legs and trunk. At that stage I had not really picked up on his anxiety levels, which his girlfriend, business partner and friends were becoming concerned about.

Ross continued to go to work and seemed to have a busy social life. It was towards the end of May when my husband went to Norwich with a load of furniture for Ross’ home that alarm bells began to ring for us. Ross seemed very preoccupied and not able to concentrate. He had no energy, no appetite, and seemed vacant. My husband recalls Ross just lying on the floor with tiredness in his bedroom and not bothered about helping with the furniture. His anxiety levels were high.

In June, Ross’ girlfriend persuaded Ross, who was being a typical man, to see the G.P who then arranged blood and stool tests and gave him penicillin and steroid cream for his symptoms. These (basic) blood tests came back clear but now he was suffering from panic attacks and insomnia. A week’s break in North Norfolk did not help as Ross seemed very anxious and was not sleeping and was unable to get his sense of direction when cycling with his girlfriend, which is something that had never been a problem before. His G.P. then diagnosed him with anxiety and prescribed him medication to help with what seemed to be an anxiety stress issue.

Ross was given mirtazapine by the G.P. and referred for counselling. My husband and I went to Norwich to stay with Ross and his girlfriend to help them. Ross complained of tight chest pains and said his body felt weird on one side. He said to me he thought he may have a brain tumour and that he felt odd and felt he was having problems concentrating. He sat me down and told me he had a confession and that he was worried I would be cross. He told me he smoked tobacco and that he may have lung cancer and die! He said he felt life was out of control and that he never finished jobs at home or on the allotment and was scared something bad would happen to us all. He got upset and said he never makes an effort with the neighbours and that he never does what he says he will do.

I remember thinking ‘What is going on with my son’? I reassured him and said we would get another doctor’s appointment to get him checked out again. We spent time with Ross and his girlfriend and talked through everything in Ross life. We all were looking for answers to explain the mental change in our son – stress of work; grandad dying or the big 30 coming up! We told him he could always change jobs or they could move house but nothing could reassure him. We spent the next week helping him clear the garden and garage. He seemed to just want to throw everything out of the garage! He got extremely anxious that his dad was going to get electrocuted when they were using the pressure washer to clean the patio.

We took Ross and his girlfriend for a meal in town. We noticed that he was struggling to join in the conversation and also seemed to be coughing and gulping a lot when eating as though he was choking and also he sweated a lot. He said he was fine and just felt hot and I remember thinking that well even as a kid he used to wolf his food down. In retrospect, why then didn’t I , as his mum get my brain into gear and think, there has to be an explanation for all this, however we were all focused on the diagnosis of stress and anxiety.

We decided that Ross should come back to Kent to stay with us while his girlfriend was at a conference in Germany. I left Ross upstairs to pack and an hour later found him saying “what am I doing –this is ridiculous coming back home to you”, I persuaded him that his paternal grandparents wanted him to visit and that also he could see his siblings would be nice. I had to pack his clothes for him and lead him downstairs by the hand. At that stage I was feeling so very troubled by his anxiety and lost soul look.

In the car he was very quiet. I encouraged him to put Bruce Springsteen on to sing to, something we all loved doing. Looking back, he seemed to struggle working the audio unit controls in the car. He didn’t sing and he seemed all hunched up.

As soon as we got to our home Ross went and sat in the lounge and wept uncontrollably in my arms saying he had never been so petrified in his life and thought we were all going to be killed by lorries on the road and airplanes dropping from the skies. He was worried about his girlfriend in Germany and would she be safe. I tried to calm him down and reassure him that under stress we all get life and fear of things out of proportion. I told him we could go for a nice walk the next day at Tankerton which he has always loved, but he said “No way, we would all get swept out to sea!” He then cried about his maternal grandad dying and said he wished his nana (my mum) were here. At this stage I too was crying. It took ages before he eventually calmed down. I assumed stress and anxiety and bereavement issues were a major factor in Ross’s behaviour.

This story is continued in Part 2 Anti-NMDA Receptor Encephalitis Lived Experience – Michele’s Story – Part Two – Encephalitis International

For more stories on Anti-NMDA Receptor Encephalitis, or other types of Encephalitis, please view the Your Stories section of our website.