How did this happen?

It is kind of a strange story for me. I went through life not thinking that MS would ever enter my life. At first it didn’t. I knew of one person when I grew up that had a diagnosis of MS, a former Rockette dancer in her younger years. I didn’t know her except by sight and she had no disability that I could see, at least not then. MS was something that seemed rather rare, not something that was talked about or seen.

I graduated from nursing school with some general idea of what MS was. After a couple years of hospital nursing I went into public health nursing. There I became aware of the Rams program and I think I had one patient who was involved with Rams. I did not stay in nursing long.

My husband and I started a family. When one of my five children was in college, she would call me that this or that was bothering her. It wasn’t anything specific that I thought we should worry about. In her younger years she had little complaints and often went to the school nurse, which I figure it was for the attention and again there was nothing specific. Her medical exams were all normal. Then one night while at school she called and complained of general numbness from mid-torso down. She went to the local hospital at college. They dismissed her complaint to typical college student anxiety.

She came home to see a neurologist and it was determined she had Transverse myelitis with the explanation that some people get this and it goes away and not to worry. She went back to classes; it got better and all was back to normal until a few weeks later I got another nighttime call from her; she woke up with fuzzy vision in one eye. She went to an opthomologist at school and was diagnosed with optic neuritis. With both conditions TM and ON, next came the MS diagnosis.

It was just before her 20th BD. Not knowing much then, and thinking canes and wheelchairs were in her future, we were devastated with the news. Where did this come from? We knew no other family members with MS except for a distant cousin we learned about later. She went on medication and has done well. Beside our parental concern, it then became my own personal problem as well.

Three years after her diagnosis, I woke up and I felt slight numbness from the torso down. I knew right away what it was. To make this story shorter, I had TM and then an MRI confirmed that I also had MS. I was 57. It was not one of those situations where I had complaints of unknown origin throughout my lifetime. I can look back and maybe tag some vague symptoms, but hardly worth a notice or a thought in my mind that anything was wrong with me. I was never athletic as a child, sometimes I had low energy, but I figured it was just who I was. It could be too that my five pregnancies protected me from any inkling that I had MS, and so far I don’t see any specific progression of MS in myself and I think not in my daughter as well. I did not totally recover from the TM and still have numbness in my feet since.

There is no doubt that this double diagnosis has had impact on our family. I worried about my other four children having MS at some point. I have read others’ stories and I guess we are pretty fortunate that the impact has been less than it could have been. However, there is always worry about long term effect physically and financially. It is interesting the more we find out about MS; for example where we live we experience long winters and not a lot of sunshine at times which could be a contributing factor, and It is known here to be high in MS cases statistically. I grew up in my early years in this city as did all my children who were born and raised here. Who knew about the lack of sunshine and vitamin D then? Now it seems I often meet people who have MS or know of someone with MS and MS doesn’t seem so uncommon anymore. Has something changed? Was it maybe not genetics in our case but rather the environment or some virus we both incurred as children? Could it be better diagnostic tests that it is found more often? Could it be something else in the environment other than lack of sunshine? I still don’t know how MS happened for us. Hopefully we will know someday.

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