My Transverse Myelitis Journey

It all started with a sharp shooting pain across my upper back and going up to my neck. Following that, I felt a tingling sensation running up and down my right arm, like ants crawling . It was uncomfortable but not painful, so I did not pay much attention to it. This feeling carried into the following week and my right arm grew weaker. I lost my appetite and also began to feel tired for no reason. I started experiencing pain across my shoulders at the back of my body.

I went to a specialist in the National University Hospital (NUH) thinking that it was a frozen shoulder. The doctor spotted a bone spur on my right shoulder through an x-ray and thought it was the cause. By the time my second follow up visit with him was due, I was dragging my right leg and when I reached the hospital, my right arm was limp, and my body was extremely weak. The doctor first thought I had stroke, but I was coherent and he ruled that out. He then suspected that something was not right with my nerves and I was warded and put under the care of the neurological department. By the next morning, after an emergency late night MRI scan, I was diagnosed with Transverse Myelitis (TM) with swelling from C3 to C5 of the spinal cord. I was given intravenous steroids and transferred to a high dependency ward to monitor my breathing and swallowing.

Within one week, I lost the function of my left arm too, my bowels and bladder functions, and I could not sit up or turn in bed anymore. I was sent to a step-down community hospital for rehabilitation and within 2 weeks, I lost the function of my left leg too. I was totally paralyzed, from neck down!

I was sent back to NUH and my spinal cord was found to be inflamed from C2 to C6, the lesion had increased!

While in the acute hospital, before and after my first relapse, there was a flurry of activities, brain scans, lots of blood withdrawn for tests, MRI, eye tests, nerve tests, lumbar puncture, etc. to diagnose the illness and subsequently the cause of the inflammation. If not being wheeled out of the room for tests, or if there were no visitors, I would be lying alone in the room, looking at the ceiling or at a small angle to the left and right of my head, as my neck had limited movements.

I could not press the emergency call bell, so my room door was left open, so that I could shout for help when necessary. However, even when I shouted, no one could hear me as my voice was hardly audible as my body muscles were so weak. I had excruciating nerve pain and non-stop spasms. While having spasms, my arms were turned inwards, my legs were straightened and my body seemed to be electrocuted with internal movements. I needed at least 2 nurses to shower me on a trolley shower bed, in other words, showered while lying down.

I was devastated, from a highly independent person, I became totally dependent on others  for everything, turning in bed, showering, feeding, drawing out my urine and cleaning me up after  I let go of my bowels, brushing my teeth, etc. I could not do a single thing on my own! I felt like a living copse! It was torturous to be trapped in a lifeless body.

I was overwhelmed with sadness but I did not fall into a depression as I knew I had to stay strong for my family’s sake, my husband and my 3 teenaged boys. However I am no superwoman. I did cry, not because I was wondering “Why me?”, but more so of the fear of the unknown, “What is happening to me? Can I recover? Is this temporary?” The fear came about because my family and I had never heard of TM before and the illness had no warning signs, I became paralyzed practically “overnight”. I believe everyone has heard of cancer, stroke, muscular dystrophy, diabetes, etc. But I doubt many know what TM is.

No exact cause could be pinpointed for the inflammation. Back in the NUH, after I had lost the function of my whole body, I was again given steroids; however it still did not work. Finally I was given a cycle of plasma exchange. About a week after the plasma exchange, two fingers were able to move a little and the doctors moved me to the step-down hospital again for rehabilitation.

There was no other medication to treat me other than the initial stage of intravenous and subsequently oral steroids. After that, I was given medication to control my spasms and treat my nerve pain. I stayed a total of 7.5 months in hospital.

Second Relapse- diagnosed as having NMO

Last year, in July, 2012 (3 years 8 months after I contracted TM), one morning I woke up feeling sick and nauseous and this continued for about two weeks. I could not eat well and during the second week, I started throwing up everything that I had eaten. I saw a general practitioner who thought I had stomach flu. It did not dawn on me then that I was having a relapse until one morning when I woke up feeling numbness on my right leg.

I was warded again in hospital and an MRI showed a relapse of the inflammation at C4 and C5 of the cervical region of my spinal cord. I was given intravenous steroids. I also received physiotherapy to help me stand and walk again. After a blood test was administered, I was diagnosed with NMO. To prevent future attacks, I am being treated with immunosuppressant, first starting with azathioprine, then oral steroids. I had to go for weekly blood tests to monitor my liver. After the sixth week, I had to change medication and am now on mycophenolate. I am keeping my fingers crossed that I will not go into another relapse.

It has been 4 years and 9 months since I first had TM.

Through intensive therapy, both inpatient and outpatient, I am now able to walk slowly for about an hour (still have balancing problem), feed myself with elbows supported by a table, go to the toilet, type with my index fingers one letter at a time, write slowly with a pen, and text message with my left thumb. I have gained back my bladder and bowels functions and am also free from spasms.

I have lost my deltoid muscles at both shoulders, hence not able to lift up my arms.  I still need help in showering and dressing. My neck is stiff, my legs are stiff, and my fists cannot be clenched properly.  I suffer from extreme muscle pains 24/7 at the shoulders.  I pant when I walk, talk too much or too loudly.

It was a tough roller-coaster journey and my family, especially for my husband, who went through a lot trying to look for information and support in Singapore, but the only information we could get was from the doctors.

I am fortunate to have the support of my family and friends. I am also fortunate to have received excellent medical care and therapy treatment to help me recover partially.

I now wish to help others by starting a Singapore support group and sharing my story, in the hope that others who are afflicted with TM will not feel so lost and alone in their struggles.

~ Carol Lim-Ng from Singapore