My Life is Forever Changed

8 days before my 25th birthday, I received some potentially devastating news. I have Multiple Sclerosis. I’m still in shock, although it’s becoming more and more normal.

The Story
I won’t go into the whole (LONG) story, but essentially, for 2 months I was having problems with my right eye seeing colors more vibrantly than my left eye. I thought it was my prescription was changing due to my new monitor at my new job, so I went to the eye doctor. He became concerned and ran additional tests. His tests came back saying that I had lost some of the vision in my right eye, which was abnormal for a healthy 24 year old, so he sent me to a retina specialist. 

The retina specialist ran her tests and didn’t see anything unusual, but thought that my right optic nerve might be inflamed, but since the nerve is behind my eye, she wasn’t able to see it. So she sent me for an MRI.

The day after the MRI, I got a call from the retina specialist (so I immediately knew something was wrong, since patients normally get follow-up calls from nurses if everything came back normal). She said that my optic nerve was inflamed but even more concerning, I had several lesions on my brain that were consistent with Multiple Sclerosis. She immediately got me in with an MS specialist.

The specialist confirmed the diagnosis, and we discussed the depth of the disease for almost 2 hours. She did a physical exam of balance, reflexes, strength, feeling and vision, which I passed in most areas. She ordered another set of MRIs of my T-spine and C-spine, to see if I had developed lesions in those places as well. 

So here’s what went through my mind in that two weeks:
With a disease like MS, an MSer never knows where their disease will take them. For a long time, because of my eye difficulty, I was worried that I would wake up the next morning and would have lost total vision in my eye. I would cry myself to sleep every night in fear that I wouldn’t be able to see the sun rise the next morning. I also had questions like, will I lose the ability to walk or talk, would I lose brain cognition, etc. Would I be able to have children? If so, would I pass this potentially terrible disease to them? Heavy questions and concerns for a 24 year old to worry about.

I went for the MRI and anxiously awaited the results. At my next appointment with the MS specialist, she said that I did have lesions on both sections of my spine, but they were inactive (the best news I had heard in 3 weeks). Also based on my results, and our discussion at the first appointment, she thinks I’ve had MS for a few years. As soon as she said that, I felt as though it was an old diagnosis. I had instant relief.

Where I am Today 
I’ve lived with MS for a few years and I haven’t lost control of my legs- in fact, I’ve had incredible personal success in the time period that she thinks I developed MS. I’ve woken up every morning to seen the sun. I can still talk like I always have, etc. etc. etc. Now, again, MS is unpredictable so there’s no way of knowing where this is going, but I am truly enjoying each and every day that I’m alive and getting to see the sun (and of course my husband), getting to talk to my family, and enjoying every walk, and run that I’m able to do.

Plus, my eye is getting better, so I’m INCREDIBLY thankful.

Like so many times before, I’ve found peace in running. I find motivation in running. And when I’m discouraged, I find purpose in running.

Why I’m Sharing My Story
I contemplated where I wanted to go with this diagnosis in the social world. I thought about deleting my blog or blogging as though it hadn’t happened. However, I want to be the positive light that I’ve been looking for in my own journey. I want to be honest about my struggles and successes. And I hope that after documenting my experiences for 5, 10, 15+ years, that someday, a 24 year old who feels lost after her diagnosis can read my blog and find hope and encouragement.

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2 thoughts on “My Life is Forever Changed

  1. Anonymous says:

    Wow. What a story. I can relate (only slightly). A few years ago, I was having major difficulty reading (think dyslexia-like problems). I also had problems tracking with my eyes. I went to a few specialists and one said “I think it's MS, but you're too young to see any other symptoms”. I was told this alone, with no one with me, 3 hours from home, at age 22. To top it off, my fiance's mother has MS (can't walk, paralysis on entire left side of body, little hearing, eye problems). That's all I could think about on my 3 hour drive home by myself.

    I still have to monitor myself for symptoms, since they can't be sure without doing their 'MS checklist'. Also, I was raised in an area where MS is very prevalent (prairie region of Canada). So, your blog is a very honest view of what it's like, as it could be me down the road.

    Like

  2. Faith and Margaritas says:

    Hi! Thank you so much for your honest testimony. The diagnosis of MS isn't easy and it doesn't get much easier since researchers and doctors can't predict the path your body will take. I'm so sorry you were alone but I hope you have supportive friends and family who are on board for the journey. I'm honored and humbled that you stopped by my blog and would love for you to continue to stay in contact with me!

    Like

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