My TM Story

By Ana Mendoza

July 20th of 2018 will be a date I’ll never forget. I was out of town with my husband, our baby girl (who was just 3 months old) and some other family members when the first symptoms of TM manifested. I grabbed a cold soda and snap! Just like that, my fingers were tingling, hurting and burning all at the same time. The feeling went up to my spine and chest through my left arm and flowed down until it reached my right hand. I have never experienced such pain in my entire life, not even my c-section. About 15 minutes later, I couldn’t hold my baby to breastfeed her anymore – I didn’t have the strength. Our family thought it must be a reaction to the height in the mountains and suggested that I lay down. A couple of hours passed, and I felt too exhausted even to sit up straight. I got up and tripped on my way to the bathroom since my legs were also not responding, and my fingers were already useless to pull down my underwear. I panicked and burst into tears of fear and called my husband. I was completely paralyzed from my armpits down two hours later, so my husband rushed back to the city and called my parents who were waiting for me with a neurologist at the Emergency Room (ER).

The MRI confirmed my spinal cord had an inflammatory injury level C3-T1. I had to use a catheter since I hadn’t peed in more than 24 hours. It was also getting harder to breath, so I was started on steroids and admitted to the hospital. They kept me in the IMC (Intermediate Care Unit) for three days to make sure I didn’t get any worse and afterwards I was transferred to a room. All sorts of laboratory tests had been conducted, and the result to each and every one of them were negative. My doctor concluded this was an idiopathic case of transverse myelitis and discharged me after a week. Therapy has been a part of my life ever since and thanks to it, I was able to stand with support after three weeks and walk again without a walker two months later.

It’s been almost 9 months and I’ve suffered one relapse on my right leg, which still gives me trouble from time to time. Both legs are still weak and I can’t jump or run yet. Sensation is still messed up in every part of my body (inside and outside) that was paralyzed, but my back is the worst part. I get tired easily and struggle with the side effects of prednisone, but I am finally tapering off of it. I had to use pampers for about four months and am still working on my bladder function, which I need to put pressure on in order to empty it completely. I’m still disabled in my hands and unfortunately depend on others to take care of me and my daughter, my motivation, but I haven’t quit therapy and never will until I recover 100%.

TM has been life-changing, but also it has taught me I am stronger than I thought. I have grown so much alongside my family and my husband, who has been a great support, and I definitely wouldn’t be able to fight this disease without them.

I am positive I will recover from this. I have faith in our Lord. TM will always be there, and some side effects may remain, but it will be a daily reminder that I am blessed to be alive and that I am no quitter.

I am glad to have found the Transverse Myelitis Association and met its community. I am hopeful that people will someday be more empathetic to those like us with invisible chronic illnesses as they become aware thanks to this Association. I hope with research we not only find a cure to these autoimmune diseases and better treatments than steroids, but a way to prevent them.