My name is Michael, I have Neuromyelitis Optica Spectrum Disorder (NMOSD), and this is my story.
In 2009 I lost the sight of my right eye and the doctors diagnosed it as Optic Neuritis. They said it was a one off, offered me no treatment as they said it was too late – and that was that at the time! Over the following eighteen months I had no symptoms of illness, but I was extremely tired, which the doctors put down to long hours of work. Getting up in the morning was a struggle as my legs felt so heavy and I did not understand the reason why.
In February 201, I started with numbness and altered sensations on both my legs, my back, stomach and chest. Doctors treated me for a trapped nerve and yet, for the next nine weeks, I was getting worse every day. I went back and forth to the surgery with no real success. I was sent for an X-ray. I was also sent to see a Physiotherapist. She didn’t think it was a trapped nerve and told me to ask for an MRI scan, but the GP was not interested.
I asked my GP to refer me to a Neurologist and I was told that I would have to wait for 18 weeks. By this time I could hardly walk and my wife took me to A&E. Because I walked into A&E using crutches, I was treated rudely and told that my symptoms weren’t serious enough to queue-jump and I was sent home after a cursory investigation. Over the next two days, I became paralysed from the chest down and I was back in A&E. This time, I went with a letter from the Physiotherapist who was concerned at my condition and the doctor was still sceptical. Later that day they sent for a Neurologist, who recognised the symptoms as NMOSD and he admitted me for further tests and treatment.
Once I was admitted I had an MRI scan, a lumbar puncture and a blood test that was sent to Oxford Radcliffe Hospital which specialised in NMOSD. Once I was fully diagnosed with NMOSD, I was given Intravenous Steroids for three days and I improved over the next four weeks in hospital.
After four weeks at home I had a relapse and returned to hospital where I was given another three days of Intravenous Steroids and a Plasma Exchange, and started on Azathioprine to prevent any further attacks.
The next twelve months were full of hospital stays, treatment, medication, Physiotherapy, I had to deal with pain, spasms and Osteoporosis. I had to have the house adapted for wheelchair use.
I saw Dr Jacob at the Walton Centre in Liverpool and he put me on Rituximab which has given me a lot of improvement.
My life and that of my family has changed. I have had to stop working, which has affected us financially. There have been physical and emotional changes for us all. A lot has happened during the last three years and it sounds all doom and gloom, but for the past six months things seem to have got better and I am more mobile than I was. I would not have got this far without the support of my wife, family and friends. I am looking forward to enjoying life more.