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First Relapse

Newly diagnosed 24 year old here. I got diagnosed last year in May, just relapsed last night with a new lesion showing in my MRI due to a UTI (who would have thought?) this is my first relapse and really my first time ever talking about it..this is so hard and I don’t want to do the steroid IV again it was so difficult on me physically and emotionally afterwards. How did you cope with your first relapse?

  1. Hello HappyHome777
    My first relapse last September was when I was diagnosed with MS.
    All the symptoms l was experiencing was very new to me, being in hospital for 2 weeks, running all the tests and also having 5 days of IV steroids. After being discharged I said I'm never going to hospital again, replase or not.
    My hospital stay was fine but long.
    So I understand how your feeling right now, you experience something once you think you can't go through this again, but we are all strong, everyone who has the diagnosis of MS have to be strong, strong to face the next challenge in there life.
    I was very lucky to have the support of my family when I was first diagnosed, if I didn't have them things could have turned out different for me.
    I hope you keep well and strong, just remember we are all here for you

    1. , first off, gentle hugs. Being newly diagnosed and dealing with your first relapse is NOT easy. It's okay to feel a little overwhelmed or numb or however you may be feeling right now. I wanted to share a piece written by one of our members about having MS and experiencing that first relapse -- I also wanted to share another piece from one of our contributors about managing relapses --

      I do hope you continue to get feedback from other community members who have been there and can share how they coped with relapse, as I know that's the input you are looking for.

      If you haven't done so already, I would keep an open conversation going with your doctor about your concerns about relapse and treatment. You have the right to decide what treatment options to try or not try.

      Hang in there and please know you're not alone here! Keep us posted on how you are doing, if you feel comfortable doing so.

      Best, Erin, Team Member.

      1. Hey , sorry to hear about your relapse. They feel like getting knocked off a mountain just before you reach the top and having to climb all the way back. Steroids are a bitch and while they have their own issues, trust me, they are definitely the lesser of two evils ( You are at a time with MS where it's important to limit the length and strength of the relapse as much as possible, sadly steroids are our best option for that. Getting over the steroids feeling like a whole other mountain to climb, but you'll climb it. You'll deal with the crazy emotions, you'll lose the weight that often comes with it, and eventually, you'll be back. I understand though, my first relapse was about 23 years ago and I was a couple of years younger than you. The steroids can seem just as bad as the relapse at times but they do their job. Best of luck, you'll get through this, like I said, I've been in exactly your spot around your age, everything is much more effective now than it was back then too. Always feel free to bitch about here, but keep your head up and know that you will get through this.

        1. and given that I've gone through these things while your age, always feel free to message me if you want to

        2. steroids absolutely suck, luckily they told me this time I don’t need them and they’re positive my eye sight will return back to normal and this flare will go away on its own. Thank you 💙

      2. welcome to the forum, and I hope you'll feel at home here! I didn't find it until 2018, and I developed the disease in 1978, which is a VERY long time ago. Not only was it well before MRIs were available for diagnosis, but it was also a LONG time before I went on a Disease modifying therapy. I want to echo what Devin says below, which is that IV steroids are hell, but they beat the daylights out of the alternative, and you will begin to feel like yourself about a month after the last dose of steroids. I'll let Devin fill out the rest of the story about IV steroids!

        I did just want to give you a symbolic hug and offer a little information about UTIs. As you assemble your care team of physicians and nurses and support group members, may I put in a word for including a good ophthalmologist and a good urologist early on? of course, you may never have any symptoms related to your eyes, but you will almost certainly have some difficulty with eliminatoin, both bladder and bowel. A good urologist can be your best ally, and there is SO MUCH that they can do to make your life with MS more comfortable and easier. I'm 75, and have had a lifetime of difficulty with my bladder, and I've recently added a few things to my toolbelt that make life easier. May I suggest you take a look at the Uqora supplements? Here's a link: I'll let the website speak for itself, but it's been a gamechanger for me. And I'm even working with a pelvic floor physical therapist, and let me recommend them MUCH sooner than I encountered them for the first time!

        One of the things that happens as you make your way through life with MS is that all these changes, and all these symptoms and treatments will, believe it or not, become something resembling normal, and I use that word advisedly! The most important thing to remember is that you are not alone. there are probably about a million of us in the US alone. and the absolute BEST of them either hang out on this forum, or even work for this site! I don't know how you found us, but I'm glad you're here. We've got you, and in addition to being company, we can also assure you that you're not crazy, another character trait we hear about all the time. YOur first relapse won't be your last, but your next, when it comes, will I hope bring you back here, where we got you covered.

        In solidarity, Therry, a Team Member

        1. that is a very long time I can only imagine how much you struggled without a diagnoses for all that time. This was actually my first UTI in my 24 years of life and my MS so far only affects my eye. But I definitely am struggling with my bladder (when I sneeze I pee even if I don’t have too etc.) should I still look into a urologist? Thank you for everything

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