I was a completely healthy person before I got TM when I was 21 years old. It happened to me at the beginning of my college days when I had dreams of doing something meaningful with my life. I am from Kolkata, India.
It was July 2003, my first year of college. I was never a huge football fan, but that evening I was watching a match on TV lying on my bed. Suddenly, I developed a pain in my shoulder. Initially I thought it was just an ordinary pain. The pain started to worsen. I couldn’t sit any longer, so I went to lie down on the bed. I had to skip dinner as I couldn’t sit up. During the night, I realized I was slowly losing sensation in my legs and hands. It was such a scary feeling. I thought I was dying! In the morning my family physician came and examined me. He couldn’t understand what had happened. I couldn’t pass urine and didn’t have any sensation. I was admitted to the hospital. They did an MRI, a lot of blood work and tested my eyes.
The next evening, I was told I had a disease named transverse myelitis. They told me this and said nothing more! I was lying helplessly on the hospital bed. I was paralyzed. I didn’t have sensation in my hands and legs. I had lost bowel and bladder function.
While in the hospital, I received Wysolone, an intravenous steroid. I started getting back some sensation. Slowly I got back some movement in my hands and legs. I could grasp things slowly. My right leg was heavy and I had less power compared to my left leg.
I was in the hospital for a few weeks. My attack was at C4-C5. It took a few weeks for me to improve.
Unfortunately, I didn’t receive any rehabilitation therapy. After having read articles about transverse myelitis, I realize how important it could have been.
Initially I had a catheter. After a of couple weeks it was removed, but it was tough. I used to stand at the toilet for a long time. I actually used to sit as I couldn’t stand for long. I was discharged after two weeks. When I returned home, I walked slowly with little support. I limped on my right leg. I could use my hands slowly. I spent hours in the bathroom. I was very scared.
I started back at school in September. In 2004, I graduated with a Bachelor of Science in Economics from Calcutta University and in 2006, I completed my Masters.
I was so confused about TM. It really bothered me that I didn’t understand anything about the disease. One day I sat in a cyber café and googled TM. I came across SRNA. I was amazed to see so many people suffering from this disease. I emailed Sandy Siegel, the President of SRNA. I got a prompt response from him and we began communicating. I started reading the newsletters. When I read the articles written by other TMers, I learned that we shared many of the same experiences and feelings. In 2004, I started a support group for SRNA in India.
In 2016, it will be 13 years since I got TM. I still limp on my right leg. I still get pain on my right leg, mostly at night. On some days the pain becomes unbearable. As a result, I do not sleep well. Many nights I cry in pain. I also have bowel problems. For me it’s the most embarrassing part! During seasonal changes, my body takes time to adjust. I also get depressed easily. It’s really tough to keep myself motivated.
Everyone I speak with who has TM in India wishes there were a specific center focused on this disease. We need to have more knowledge about TM.
Life has certainly changed after TM. I try to keep myself motivated. I try to thank GOD that I can at least walk. For me each day is precious. I try to stay positive and I never lose hope.