In Their Own Words

Devic’s Disease
Jaime Liles
Rockton IL

My name is Jaime Liles. I am 48 years old. When I was 44, I was diagnosed with TM. My initial symptoms included tingling in the hands and legs, and inability to walk properly. I was unable to wash my hair, dress myself and prepare my food due to pain and tingling sensations. I then went to a world-renowned medical center. At the center, they told me I was hysterical and to go home. After a year or so of fear, struggles and pain the symptoms calmed down and I was able to walk almost normally. This lasted for about a year. Then I had a recurring episode and was also diagnosed with Devics. This time my symptoms included more buzzing and needle-like feelings from my feet to my knees and in my hands. Devics is the diagnosis I was given after an eye exam that showed a lesion on the optic nerve. This was done after I mentioned having bouts of blurred vision. At that point, I was petrified. I was so frightened of every new buzz, tingle or pain. I was sure I would become totally incapacitated. I wanted to call my physician every time something changed in my body, every time my eye twitched or I had an increase in symptoms with the tingling or problems walking. I wanted an MRI every week to monitor what was happening with me. I was so scared I would not catch the lesions in time to prevent them from growing so big that I would become paralyzed. It was at this time that my neurologist prescribed intravenous steroids. I took this course of steroids over a period of ten days as an outpatient. However, I did stay with a friend during these ten days and I recommend this, because it was very traumatic and painful.

After living with one bout of TM, I could not believe I had to live with it again and with Devics on top of it. I could not find much information on Devics or TM until I heard of the 2001 symposium in Baltimore at John Hopkins Hospital. I flew to the symposium and met many wonderful people and physicians. I was so freaked out about the TM and Devics that I was thinking of ending my life. While at the symposium, I met a physician who told me that people with TM have a high rate of suicide. These diseases are just so frightening and life changing. At that point, I received help for my depression and was better able to manage my life.

Now, my TM symptoms have decreased again and the Devics has gotten only a bit worse. I still become scared when the weather changes and my symptoms increase suddenly or if my eyes suddenly get blurry for a day. I get this rush of fear running through my body and have to tell myself to calm down, wait a couple of days, see how the symptoms go. I have to tell myself not to call the physician, not to run and make appointments. Luckily, these flare ups are temporary at this point. I have learned to keep my scheduled appointments, take my medicine as prescribed and keep my depression under control. Now, when my vision gets blurry or I have odd pains in my legs or arms, I just wait it out.

Lastly, I feel it would be disingenuous if I did not mention how important I believe my faith in Jesus Christ has been in my healing and sense of well being. Doctors and medication have served their purpose but beyond that I needed prayer and the ability to turn this over to Christ.

‘Do not fear: you are of more value than many sparrows’ (Luke 12:7).

‘Jesus said, ‘Don’t be afraid any longer; only believe’ (Luke 8:50).