Afraid to live

I was told in 2003 I had MS. My doctors assured me that I had a mild form of the disease and would most likely never have symptoms.

Fast forward to 2013. I started having bouts of incontinence, clumsiness, extreme fatigue, blurry vision and muscle weakness. Since I also have RA, I assumed that I needed to see my rheumatologist. But at my visit, things went fast.

I was immediately given an MRI. The next morning I had an LP. Within days I was at a neurologist’s office, being told I have relapsing/remitting MS. I have been on and off Tecfidera. It helps.
I am consumed with fear of the unknown. I have so many questions but I only get a textbook response.

I would love to read your views, opinions or thoughts. What happens now??

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Comments

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  • glbc942
    2 years ago

    hi acalhoun87

    I think I’m a lucky woman in that I was diagnosed a long time ago (32 years – wow). RR MS moves slowly and I once read that the “nice” thing about it is that it deals you one symptom at a time and lets you get used to it before it deals another. Also that after exacerbations, you can’t expect to go back to 100% …. but maybe 95% …. and that’s ok to live with.

    I think I’m lucky because, with the diagnosis such a long time ago, I have learned to plan for what might happen with the progression of the disease. I have saved more money than I would have. I downsized my home. When I needed a new washer & dryer, I bought a front loader. With some of my savings, I just set up a first floor bedroom with wide doors , just in case.

    Be patient. Those symptoms will calm down – maybe not go away. Plan for your future. You’re lucky. Some people are diagnosed with a terminal illness and told they have only months to live. You’ve got years . With a bit of planning, you don’t have to worry about tomorrow and just enjoy today a bit more.

    xoxo glbc942

  • Meagan Heidelberg moderator
    2 years ago

    Hi acalhoun87,
    Thank you so much for sharing this with us and our community! It sounds like your doctor didn’t take it lightly, and got you what you needed immediately. Kudos to them! We’re so glad that you now know why you were having such problems with balance, vision, etc. Although that’s not the diagnosis you were hoping for, we are glad that you’re a part of our awesome community.
    Here is some information regarding Tecfidera that you may find helpful; https://multiplesclerosis.net/living-with-ms/tecfidera-revisited-an-18-month-review/.

    Also, helpful information in understanding what RRMS is; https://multiplesclerosis.net/what-is-ms/relapsing-remitting/.

    Here’s a great article that I think you will enjoy reading as well; https://multiplesclerosis.net/living-with-ms/so-much-change/.

    This is a great site; http://www.nationalmssociety.org. Here you can find a local chapter where you can find support groups near you and more.

    I surely hope that you’ve hound these helpful. We appreciate you commenting and being a part of our community! We want you to know you’re not alone!

    Warmly,
    Meagan, MultipleSclerosis.net Team Member

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