My name is Michael, I have Neuromyelitis Optica (NMO), 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 but 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 was 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 NMO 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 NMO. Once I was fully diagnosed with NMO I was given Intravenous Steroids for three days and 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, Physio… 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.
My NMO journey started when I was 15 years old back in 2009.
After having pain in one of my eyes for a week, I was sent for a vision test. After thinking everything was fine, we were asked by the optician to go to hospital to the eye clinic and hand them a letter. So off me and my family went to the hospital and gave them the letter. After many more further checks and bright lights in my eyes and three other doctors all checking, I was sent up to the ward for the night and given my first lot of steroids.
This pattern continued for the next 10 months, every few months having the pain back and no explanation. I was diagnosed with having optic neuritis in May. During September, I was seen by one of the hospital consultants whilst having the pain, and they suggested having a new test that could be the reason for all the recurrences. (ON normally happens about twice on average – I had eight in total)
On 1st December 2009, I had an appointment with my consultant at Queens Medical in Nottingham. That afternoon I was diagnosed with having NMO and we were told there was a very small chance (1 in a million) that it would progress and move into another part of my body. We were given the signs (just in case) to look out for, and were instructed to call if any occurred.
Two weeks later I started to have back pains, and also feeling very faint and dizzy when taking part in my sports at school. My dad called the hospital and relayed my symptoms and an MRI scan was arranged. The MRI scan was booked for Christmas Eve: 9am came and I was taken into the scanner, having contrast put through as well, and two hours later I was on my way home.
After just getting home we received a phone call from the hospital asking if I could come back in to be put straight onto the ward for Steroids as they had found that the NMO had moved into my spine. I spent the Christmas in hospital as an inpatient. Due to the severity of the attack I spent the next month in a wheel chair, and having to go to school was the hardest.
My classmates that had known me all my school life turned their backs on me, and many said that this was just for attention as no one knew the condition. Throughout the rest of school I had managed to move from the chair to crutches, which were better, but I suffered many times with depression. I couldn’t take part in the sports I loved and from this my GCSE’s suffered.
I was trying all sorts of different medication over the next two years to keep the NMO away and get me back some stability but after a few months I would relapse and the medication stopped working. I was also referred up to the Walton Centre in Liverpool to see the team to help with the medication and rehabilitation.
During one of my attacks in June back in 2011, I was asked if I wanted to use a different 6-monthly medication. Rituximab is still a trial medication for many, and for some it hasn’t worked. I have been on this medication for year and half now and so far (touch wood) no more relapses!
I managed to get to 6th form, and I’m now studying at university close to home and it’s all going well. During this year, though, the medication failed, I had a minor relapse and I’m still recovering – but I’m staying positive and heading in the right direction.