Michael’s Story

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.