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Life With MS at a Young Age

Were you diagnosed with MS at a young age (pediatric, middle school, high school, or college-age)?

What was life like for you during that time?

We're trying to understand what life is like with MS during those formative years.

  1. I was 15 years old just getting ready to turn 16 when my ms was diagnosed. I lost the vision in my left eye (never got it back). I ended up having to leave school for the semester as I was falling behind from having to take off so much time for appointments while reaching the diagnoses. Went from regular eye doctor to eye specialist then to a neurologist to a ms specialist. Before they diagnosed me. Lots of research and support from family. It was the scariest time of my life. I knew what ms was my aunt had it. All the research showed me that there are different types of ms.

    1. Hi . I can only imagine how frightening that must have been at that age, especially since you lost vision in one eye. How long have you been diagnosed with MS? Have you had much progression since? Thinking of you. - Lori (Team Member)

  2. I was diagnosed while in college. The big impact at the time was that it impacted me playing ice hockey for the school. Even though I recovered from my first exacerbation, I no longer had the balance and coordination to play at the high level I was used to (I did, however, eventually go on and play in less competitive men's leagues and whatnot).

    Being diagnosed as a cocky college kid probably helped me deal with it because I most definitely felt like nothing could stop me. My naivety was absolutely to my benefit. My biggest concern was helping my friends and family not be too upset.

    For the first 10-15 years, I'd experience exacerbations and then rebound with most of my functionality back. I guess one of the biggest things for me in that post-college/beginning career time was that health insurance was massively important to me and it definitely affected some of the positions I took. I was extremely fortunate to work for several companies that were extremely accommodating to my MS, that was something also important to me. So, my job hunts were always a bit different than that of my peers because I had extra things I knew I needed to find a great fit (and honestly, I simply lucked out, it was a great time to be a software engineer, where companies were going above and beyond to get people that could do the job).

    I'd say being diagnosed during some formative years definitely helped me to grow up some and recognize some priorities that I otherwise might not have. It gave me a little more maturity and I know that helped when I started my career. Honestly, if I'd have had access to the medication I am on now way back when I was diagnosed, I might be saying that getting MS was the best thing to ever happen to me because it strengthened me as a person at an important time. Since that wasn't the case and I was relegated to the old injectables, I ended up disabled in my mid-30s and that certainly impacted the rest of my life.

    1. thank you. We will discover soon if it's working or not. It's almost time for the next MRI. I have been reading a lot about therapies. What worries me is that she may have had MS for several years, completely undetected with a silent progression. From what I read, Rebif is not effective against silent progression, so she may be taking a drug that does not help her. On the other hand, drugs such as Ocrelizumab, are described as effective for silent progression but immunosuppression is scaring.

    2. It's true, most folks have MS way before they get diagnosed, so your concerns are definitely valid. My personal belief, is that we know certain meds do a much better job, if you can tolerate them, why not use them. Not everyone feels that and I understand that. But my perspective comes from becoming disabled at 35 and also growing up with a grandfather who suffered from the disease (and seeing what having no meds can do for a person). Best of luck to you guys, sounds like you are taking an active role which is fantastic! You really have to advocate for yourself with this illness (and not be afraid of seeking other opinions).

  3. I understand your concerns. It’s maddening to try to figure things out with MS, and it certainly tests our patience. Too often, we don’t know the answers immediately. Keeping track and noting changes of symptoms/side effects etc. are the best things we can do to make a treatment decision going forward. I always suggest that as hard as it may be, don’t focus as much now on the uncertain things in the past. Your wife may or may not have been slowly progressive even though she had different episodes of past symptoms. Based on ongoing test results combined with her journal will help determine if Rebif is the right choice going forward. Meantime, focus on how she is feeling and doing at the current time. I am in my sixties now and have had to make treatment choices as they were developed since the mid-nineties. I’ll never know if my treatment choices were the right ones. As new information became available, I weighed the risks vs. benefits of each next treatment step. The one mainstay in my own MS management was to stay on top of overall health and wellness, to keep the immune system strong. Remember, Rebif is an immunosuppressant. Be sure to take care of yourself too, as you are in this together. Hugs, Debbie (team member)

    1. I was diagnosed with RRMS in 2010 at the age of 20. Life felt really... isolating. No one I grew up with, or any of the people my age that I spent time with, was going through what I did.

      It's like we were all walking down the same path in life as young adults but then MY path suddenly veered into a different direction and I was the only one who strayed from the group. They all kept walking forward without me. I was alone trying to figure out how to navigate this strange new world on my own without a map.

      At least that's how it felt.

      1. I understand how you feel. Nobody in my family has MS.No close friends - NOBODY around me. It's a lonely row to hoe! I was diagnosed in 2013 at age 33. I had been married for 2 years and had a daughter. I now have 3 children and MS threatens my marriage of 10+years. I hope you are doing well and have since found support that is helping you navigate this MONSTER.

      2. Man, I wish I knew what to say. That's rough... At least, in 2022, we have the internet to connect with others dealing with similar things in life. Keep on keepin' on!

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