The profile of the month is chosen by the MSIF editor. The March Profile is Diana de Avila.

Diana de Avila

Email:Contact Diana
Year of Diagnosis: July 2002
Occupation: Global Project Leader and Web Architect
Country of Residence: USA
Type of MS: Relapsing / Remitting
Sex: Female

People who know me can tell you that I pride myself on the diverse set of experiences that make up the fabric of my life. The paths I have chosen for myself have most often been the paths less trodden: those of a military police woman, a nun, a school psychologist and most recently a corporate information technology professional for a large corporate research center. One of the newest variables in my life now at the age of 37 is MS. I write this profile in hopes of showing although something like MS factors into the formula, it isn’t the sum of the equation.

I was definitively diagnosed with MS in July 2002. Not much time has passed since I received my official diagnosis, but I can track symptoms of optic neuritis and vertigo that took place all the way back in 1990. I was a religious sister at the time I first noticed problems with my vision. Within a few months, my eyes mysteriously recovered. Out of sight, out of mind. I did not think about that visual episode again. Throughout the next 12 years I would experience a myriad of symptoms from fatigue to intense muscle spasms, to a mysterious and long-lasting low grade fever that would be mistaken for and explored as fibromyalgia, cancer, AIDS, Lyme disease and Lupus. I would spend hours being tested, poked and prodded for some mysterious and hidden “thing” that would somehow evade the medical treatment and diagnosis I so eagerly sought. Not once in that 12 year period was I ever referred to a neurologist! Regardless, throughout a series of strange physical experiences I still was able to move on. I could forge ahead with life until one set of symptoms interfered heavily with my occupation as a web architect and global project leader. These new symptoms masqueraded as bilateral carpal tunnel syndrome.

The thought of having carpal tunnel syndrome in my occupation was tragic. I began to adopt the use of speech recognition software and go through intensive physical therapy to find a way to accommodate and function. The pain and uncomfortable therapy did not appear to be helping the issue and I was sent to a hand specialist for evaluation. After multiple visits with him, he expressed that I had “something he could not treat” and that he had to send me to a neurologist. By this time, numbness became much more diffusely spread throughout my body: face, legs, trunk and arms. Carpal tunnel would not have caused all of that! Through the good graces of a dear friend who’s husband is a neurologist, I was able to get an appointment quickly to see a wonderful neurologist he knew who specialized in MS. Then began the months of waiting and testing. The time often referred to that of being an MS “limbo-lander”. This waiting period proved to be one of the most difficult times as most of my tests came out negative barring some protein in my spinal fluid. Clinically though, I presented with various signs that helped to expedite a diagnosis (sensory, optic neuritis, bladder “failure to empty”, muscle tone and ankle clonus). My wish was to start therapy as soon as possible.

As I navigate this course of MS, I have found courage through knowing that I share a journey that many other people have successfully and gracefully walked. Currently I deal with fatigue and some cognitive changes (I cannot juggle and multi-task quite the same way I used to be able to and focusing is more difficult). With the advice of my neurologist I am taking a vacation and moving to a lighter work schedule (32 hours a week). I am looking forward to a period of rest and refocusing on my job and starting fresh. I’ve learned that I cannot push myself in the same ways I am accustomed to doing and I think I have also learned that “that is ok” … it’s a part of life now and one of my newest and greatest challenges. However, like so many others … I am up to this one and determined to embrace it and overcome it.