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Arif’s Story – Becoming Stronger with TM

Posted by: The Sumaira Foundation in Patient, TM, Voices of NMO

Me and some of my students

My name is Arif and I am from Jhansi, a historic city located in the northern part of India. This is my TM story…

I was in my final year of pursuing an MBA (Masters of Business Administration) at Pioneer Institute of Professional Studies (PIPS) in Indore when it all happened. In August 2010, I had been experiencing sharp pain on my upper back and with every passing day, my right leg was feeling weak with tingling sensations. I got admitted right away to Bombay Hospital Indore where I received IV steroids for five days.

In October, I was at home in Jhansi when I suddenly woke up paralyzed from the waist down. I could not get out of bed. Something was definitely wrong and I was terrified. Finally, I was diagnosed with transverse myelitis (TM)*. Unfortunately, due to the new diagnosis and all the challenges that accompanied it, I could no longer attend school. My initial hope was that eventually I’d get better so I could go back and resume pursuing the degree but the situation got increasingly worse and thereby, I did not receive my MBA.

Just a few months after getting diagnosed in January 2011, I had yet another acute attack as a result of getting off the prednisone. After being unconscious for three days, I finally woke up from a deep sleep and realized that everything in my life had changed. I was officially paralyzed from the waist down. The high doses of intravenous methylprednisone (IVSM) made me so drowsy that I could barely think.

Words cannot describe the fear I felt; I felt so broken inside.

Ten days later, I finally got discharged from the hospital. I got to go back to my house but things were different now – I was bedridden. This was a HUGE change for me. However, after one month, I was able to walk with the support of a walker. Victory! Since 2011, I had one more acute attack in March 2016.

Today, I am steroid- dependent, receive Methotrexate once a week, and get around using a walker. Any time my neurologist attempts to reduce my steroid dose below 15MG, I experience progressive weakness so I am on 18MG daily. To keep busy and prevent myself from constantly worrying about my health, I decided to go back to the school environment but in a different capacity. Now, I am a mathematics teacher to school children aged 14-15 and I love it.

TM, NMO, and really any chronic illness completely changes a person’s life. But it’s important to see the good in everything; it’s hard but I assure you there is a silver lining in these tragic circumstances. Personally, I believe that transverse myelitis has transformed me into a more focused and pensive person. My goal is to work towards becoming independent and stronger physically, mentally, and emotionally. With incurable diseases like transverse myelitis and NMO, it’s really important to maintain strong willpower and a positive outlook on life because it will ultimately help us fight our disease.

Jhansi, India

*Transverse myelitis is an inflammation of the spinal cord, a major part of the central nervous system.  The spinal cord carries nerve signals to and from the brain through nerves that extend from each side of the spinal cord and connect to nerves elsewhere in the body.  The term myelitis refers to inflammation of the spinal cord; transverse refers to the pattern of changes in sensation—there is often a band-like sensation across the trunk of the body, with sensory changes below. (Source: National Institute of Neurological Disorders and Stroke)

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