In observance of MS Awareness Week

March 5, 2014

I spoke at an MS event in Birmingham, Alabama, on Saturday, March 1, and told the story of my MS diagnosis almost 16 years ago. I have posted it here  in honor of MS Awareness Week and in the hope that it will help educate others about this chronic autoimmune disease that affects the central nervous system:

I had my first MS symptom in 1990. I didn’t know it was an MS symptom; I just knew I didn’t feel right. I would find out years later that it was transverse myelitis, known as the “MS hug.” It was a band of numbness and tightness around my rib cage. I saw a neurologist,  but he was unable to diagnose the problem. He prescribed an antidepressant and said it would subside. It did subside (because that’s what MS does), and I didn’t think anything more about it until I started noticing other problems, such as weakness in my right leg and urinary incontinence. I saw more doctors, but they couldn’t diagnose my problem either. I moved on to a chiropractor and then to a massage therapist, who noticed a problem with my gait but told me it was because my right leg was shorter than my left. (He was wrong.) I was about to give up when my gynecologist referred me to a urologist for my incontinence issues. She suggested several treatments, but the problem continued. I went back to see her again and again with no results.

During one visit, I mentioned I worked at Alabama Power, a large electric utility the serves the lower two-thirds of the state. (I have no idea why I told her that. She may have asked where I worked.) She told me about a problem she was having with her electric service. I gave her a number to call about it, and I figured that if she was going to tell me about her problem, well then, I was going to tell her about the weakness in my leg. Telling her about a second symptom made all the difference. She determined that the problem was probably neurological and said that I might have a demyelinating disease. She referred me to a neurologist (a different one). After an MRI and other tests, he diagnosed it as MS and referred me to an MS specialist. That was in 1998. It took me eight years to get a diagnosis. My story is about persistence and resourcefulness. If I had given up instead of being so stubborn about it, I might have never been diagnosed.


One Response to “In observance of MS Awareness Week”

  1. Rick Watson Says:

    Hey Jane, this blog looks fine to me. If it’s easy to navigate and easy to add photos etc that you’d like to add then it should be fine.
    I signed up to get notified when you post so let the fun begin.


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