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Posted by: The Sumaira Foundation in NMO, Patient, Voices of NMO
In 2020, for some months, I was feeling a burning sensation on both my legs and itching on my shoulders, symptoms that I had mentioned to my doctor. He told me it is neurological but didn’t consider the symptoms serious enough to be referred to and examined by a specialist.
On January 11, 2021, I received the pneumococcal vaccine and just five days later, I woke up with numbness in my entire left arm, hand and fingers with pain on the injection site of the vaccination. I also felt a very strong pain on the left side of my neck.
After some days, I started feeling numbness on my legs and had fainting spells. I visited the hospital twice but the doctors could not determine what was wrong with me. They thought the symptoms could have been due to panic attacks although I had personally felt that something strange and serious was happening to me.
On February 28, 2021, I felt something like an electric shock in my brain and a sharp pain on my knees that forced me to sit on the chair. I couldn’t walk, I fell down and felt painful spasms on my entire left side.
I was transported to a private clinic via an ambulance. I had an MRI which showed a lesion on the spinal cord (left side of the neck C3-C4). I was given IV steroids for 5 days and had undergone various examinations including blood tests and a lumbar puncture which ultimately determined that I was aquaporin-4-positive. I was told that I have NMO otherwise known as Devic’s disease which until that day, was unknown to me.
I was an inpatient for 10 days at the private clinic and then transferred to another town where there is a special center for neurological and genetic diseases. In one week, I had another attack which caused me to lose sensation from my waist all the way down to my toes. I also experienced these awful “bear hugs.” During this episode, I received plasmapheresis (PLEX) for five days. After five days of PLEX, I was sent home with a prescription for steroids, carbamazepine and clonotril for nerve pain.
In the spring of 2021, I received my first two infusions of rituximab. In early fall of 2021, I had another relapse. I received five days of IV steroids and then again one month later. In November 2021, I received 7 days of PLEX.
I used to work as a police sergeant and unfortunately, I have lost my job. It was impossible for me to continue working. I was a very active person. This was a complete shock for me and my family. When the doctor told me the diagnosis, it felt like a nightmare. I couldn’t walk. I didn’t have good balance. I couldn’t drive and I had many fainting spells.
I have tried a lot and have done my best with physical and occupational therapy. I have stopped steroids and now take carbamazepine and clonotril plus supplements regularly alongside receiving rituximab infusions every six months.
As I live on an island with only 600,000 people, I was searching for anyone who has the same illness. I was told that I am the second patient over the last 20 years in Cyprus with NMO! I have never found the first one and I am not sure if he/she is still alive.
I hope that one day scientists will find a cure for our illness and not only rely on preventative medicines for relapse management. My prayers and love to all my fellow NMO warriors!
