My Diagnosis Story – Part 1

Almost everyone with MS has one.  I thought it was time to share mine.  A fellow blogger suggested we not dwell on the past, but understanding the past helps us process the present and cope with the future.   So, here it is…

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I was 26 years old.  Mr. Legs and I had been married for over three years, and we were feeling stable in our marriage and finances. I know many people don’t have the luxury of choosing when to start a family, but it seemed we did.  It was the right time for us and we were ready to welcome a baby. Before too long, I was pregnant, and we were happy.

When I woke up one morning in 1986 and opened my eyes, they didn’t adjust/focus like they normally did. I rubbed them. I squeezed them closed hard a few times. I looked at things close up, then further away, then close up again. There was something wrong, but I couldn’t explain it. I had spots of blurriness. Later, I would read words from others that described/explained it as though someone had put Vaseline in places of their vision.

I determined it would be safe for me to drive, so I went to work that morning. Instead of the problem going away, it got worse. Co-workers encouraged me to see a doctor. By then, I was questioning my driving ability, but decided I’d better get the problem checked out so I went the short distance to the ER at the Army hospital (which is what we were supposed to do since we weren’t given an assigned doctor to call for an appointment).  I waited my turn and was seen by the doctor on call in the ER who was young and seemed quite nervous.  I had arrived agitated and that feeling was magnifying. As the doctor was giving me a glaucoma test with shaky hands, I asked some pointed questions about his credentials and discovered that he was an obstetrician, which I found uncomfortably amusing. (I refrained from laughing because both of us shaking would have been worse.) Eventually, he relented and gave me a referral to the EENT clinic in the same building. I walked directly there and checked in at the desk, again waiting my turn. I had a thorough examination by an ophthalmologist.

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When he was done, he said “I think I know what’s wrong with you, but I’m not going to tell you.” When I questioned why, he said he didn’t want to worry me. Of course, I insisted he tell me before I left. (I’m not sure how he thought I would respond to him saying he thought he knew what was wrong but didn’t want to tell me…who would leave without knowing?)  He hesitated, but had been backed into a corner so he took a deep breath and said “I’m pretty sure you have multiple sclerosis”.  After he said the words, I stopped breathing for a moment.  I asked if there was anything else it could be, to which he said he ruled out the possibility of a brain tumor because of how the vision changes were presenting.  The words I heard kept repeating in my head….multiple sclerosis….multiple sclerosis.  He was right about me being worried.  I worried on the way to the car and on the way back to work and then on the way home from work and after I got home. I went through the motions of supper and evening and bedtime, but the world looked different…grayer… than it had the day before.

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That day, when the world literally looked different, my view of the future also changed.  I forever lost something I hadn’t even known to treasure. I lost my perception of good health.   My confidence bruised, my self-image shaken, I removed my rose-colored glasses of infallibility and began to deal with the reality and uncertainty of a debilitating illness.

A few days later, Mr. Legs and I drove a couple of hours north to a larger hospital for some tests. I remember the evoked potential test where electrodes were attached to my head and I watched activity on a screen. The tests revealed abnormalities, but did not meet the requirements for a diagnosis.

Within about a week’s time, my vision gradually improved without any noticeable permanent damage (except for my vision of the future).  With my eyesight unhampered, I went to the library and found some books about MS. In reading them, I discovered what MS was, what type I likely had, and how it might affect my future. I worried more. I had nightmares that I was awakened by my baby’s cries in the night and couldn’t get up to go to him.  My husband was a soldier who routinely went on training exercises so was away periodically and sometimes left abruptly and I wondered how I would manage the care of a baby. I had some terrifying moments.  I didn’t know then that I would have many years of living normally before symptoms of MS would appear again, so I spent a lot of time and energy wondering when the disease would show up demanding to be recognized again. I prayed that I would be able to lovingly care for my child until he could mostly care for himself.  I remember telling a couple of people about the news I had been given, but they dismissed the news as highly unlikely, if not impossible. I didn’t share the scary news with anyone else because people were discounting it anyway.  My best option was to ignore it and hope it went away.

Because I was pregnant at the time when my vision trouble happened (which I now know was optic neuritis), I wasn’t able to have an MRI.  Months later, I did have an MRI, but the problem had resolved/remitted by then so the test showed no evidence of MS. I was relieved by the results, but remained suspicious of the future.

Click here for Part 2 of My Diagnosis Story.

 

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About Climbing Downhill

Wife and mother of grown kids, in my 50's and dealing with MS, making life's moments count and trying to offer something of value to others along the way. https://climbingdownhill.wordpress.com
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3 Responses to My Diagnosis Story – Part 1

  1. My craft corner says:

    you are so very brave, I would like to read the rest of your story.

    • Truly I am a wimp, but thank you for thinking otherwise. Part 2 will be posted in a few days. I am glad you commented so I could be led to your blog and see your handiwork. If you have time, please look at my posts “The Jeweled World of Janie Parts 1 and 2” under my “People stories” category to see the work of my talented friend.

  2. Catherine says:

    Thank you for sharing Part One…and I look forward to reading more! You are such an encourager! 🙂

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