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Monday, June 15, 2015

An MS Patient's Story: Out of the darkness: Living with multiple sclerosis - Sharing my 40-year story with multiple sclerosis (MS)



By: Sallie Aull, a Roche employee living with MS





It was 1975, and I was a young woman – only three years out of school and developing my career. I was just beginning to realize how bright life could be until one morning when I awoke to darkness. I was totally blind.

The doctors and specialists initially thought it was a brain tumor, but numerous X-rays ruled that out. The nerves in my eyes appeared to be swollen, so I was given steroids. After four months, my vision began to return slowly.

In the 1970s, the most reliable procedure for diagnosing MS was to eliminate all other possibilities and then perform spinal tap or lumbar puncture tests. The entire process was miserable, painful and humiliating. I had to visit a leading medical institution for a second spinal tap to finally hear that the most likely diagnosis was MS.

For the next 20 years, I had many symptoms that mainly affected my vision and legs. I would experience unbearably sharp pains in my eyes and would be regularly treated with steroids. When I was 27, I suddenly lost control of my legs and took a bad fall. Surgery was required to repair three torn ligaments in my left knee. However, I still did not have a confirmed diagnosis of MS. Diagnosis and care were just different back then.



Me with my husband, Larry, a few years after my first symptoms

The 1970s and 1980s were a time when medicines were not available to prevent a MS attack (or relapse). The only option was to treat the symptoms of the relapse, usually with steroids.

Mysteriously, in the early 1990s, my symptoms began to subside. I felt like the disease – what I call “my monster” – decided to take a break and submerge. He would occasionally kick up some rough water, but it was bearable for the most part. I began to listen to my body and understood when to rest, how punishing heat and humidity can be, and not to push my own limits.
I don’t know how MS will affect me next, but I do know that I’ve learned a lot from it.
In 2014, “my monster” resurfaced with a vengeance. My legs became very weak, and my right foot started dragging on the floor when I walked. My joints swelled and were extremely painful. Doctors thought that I possibly had a different autoimmune disease. I got a magnetic resonance imaging (MRI) scan of my brain for the first time, and I finally received a definitive diagnosis of MS. Recently, I began treatment with a disease-modifying therapy.

My journey has been a challenging 40 years. I don’t know how MS will affect me next, but I do know that I’ve learned a lot from it. Here are three things:


  •  I’ve learned to be more open with people around me – telling my husband when I feel overwhelmingly tired or sharing with my manager at work when MS causes me to be emotional.
  •  Most importantly, I’ve learned to be better at accepting their help when it’s offered, which has made my relationships with them so much stronger.
  •  I can more easily handle day–to-day living thanks to my strong support network of family, friends and work colleagues. I am particularly proud to work for a company that is studying new ways to better understand and treat MS.

  1. Also, I’m grateful for the medical advances that helped me know for certain that I have MS.  I thank those in the labs who continue to make MS less mysterious and develop better methods of diagnosis and treatment. I have renewed hope that I can remain out of the darkness.


This patient's story can be found here


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