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Newly diagnosed and terrified....

I am looking for some words of advice. I was just diagnosed Monday with MS and will be seeing my neurologist tomorrow. I am on an emotional rollercoaster right now and don't know I am going to live with this disease. I am in a dark place and thinking only of the worst.

  1. Hi @jd2b2001 and welcome! While I wish no one had to deal with MS, I am glad you found our community. Please know you are NOT alone in this! Nearly every member of this community has been where you are right now. Receiving that initial diagnosis can be an overwhelming time that unleashes a storm of emotions (pain, grief, relief, denial, anger, depression, numbness, etc). You CAN do this, but it's okay to take time to grieve and swear and just take a nap if you need to. No one else gets to tell you how to process this information. I wanted to share a piece from one of our contributors with some great advice for the newly diagnosed (heads up -- our new operating system is being wonky and if the link doesn't work, you may have to copy and paste this info. Sorry about that and we hoped to have this particular issue ironed out soon!) -- It's natural to be inundated with "what ifs" and to conjure up worst case scenarios. I think human beings like to know what we're dealing with and the unknown aspects of MS can be scary.

    But, as I said before, you are not alone in this fight. This community (and others like it) understand what it is to live and THRIVE with MS. And we're here for you -- 24/7.

    I hope your neurologist has some helpful treatment options for you to consider and that he/she is able to answer any questions you may have. Feel free to come back here and update us on how the appointment goes, if you feel comfortable doing so.

    Thinking of you, Erin, Team Member.

    1. I am wondering if it is normal to be afraid of everything since getting the diagnosis. I worked out 4-5 days a week before this diagnosis and now I am afraid to even stand for fear that my legs may just give out. Mind you I have no weakness and in fact the doctor told me I had a normal neurological exam I am just terrified that this disease is going to take me life in the blink of an eye.

      1. Not only is it normal to fear the unknown following a diagnosis, it is common. I don't know anyone who doesn't go through this.

        My way through has been to find new strategies that keep me safe while still allowing me to do the things I love.

        In my case, it was making modifications to yoga poses in class and using different tools when I garden. As you explore what your body will and won't do... and for how long... you'll begin to know your "new normal" in a way that will give you a sense of what does and doesn't limit you.

        Even perfectly healthy people have limits, so it's probably better to think less about how MS might limit you and think more about how you will live fully even if you have MS.

        The best way to do this is to proceed to do your favorite activities with caution. You may find you are less limited than you thought, that the fear of falling was unfounded. Or maybe you do fall, but then you learn some new ways to work out to keep you safe.

        You may also discover that some things you enjoyed before may be harder now. I gave up a job I loved for this reason... but then I got a new job that I love even more. I also used to travel by plane for vacation, and now I am quite happy camping within an hour of my home.

        You can replace some activities that are too taxing with others you also enjoy. You can also do the taxing things knowing you will rest afterward or do them with an abundance of caution, at least at first, until you can see what you are now capable of.

        I find that some days I feel like I don't have MS at all, and other days, I can't escape it. It's part of the unpredictability of this disease and you will find ways that help you manage this uncertainty. Sense of humor, links to the MS community, and support systems within your social circles are all must-haves. You are, after all, the same person today that you were before diagnosis... you just have additional obstacles. Yes, they suck! But they can be overcome or at least avoided or managed.

        Over time, you do graduate out of this anxiety cycle that follows diagnosis, as you learn what works and doesn't work for you. But most importantly, you will learn that you still have many opportunities to maintain a full and meaningful life, it just may not be the one you planned for originally.

        I hope this helps!
        Tamara, patient advocate

    2. Here are two posts that may really help you manage this new territory:

      You are going to be more than fine, especially now that you are here among people who are living with MS and know the ropes! Welcome to the group and don't hesitate to ask questions, vent, share your fears (or your triumphs, however small!). We. Get. It. <3

      Tamara, patient advocate

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