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Confirmed diagnosis today

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    Confirmed diagnosis today

    Hi everyone, I am a 32 y/o working mom with three kids, 6, 7 and 15.
    I've been lurking around here for the past month or so, reading and learning.
    I had my appt with my neuro today who feels that I do in fact have RRMS, based on my MRI, LP and present and past symptoms. Though he is going to do another MRI to check my spine, which was not done in the first MRI.
    I feel lucky that I haven't had any motor deficits with movement, just dizziness and numbness and pins and needles and fatigue. This has been going for about six weeks, some days I feel sort of normal.
    I feel relieved that 1, this is something and not my imagination and 2, its not a something immediately life threatening. I start Copaxone soon, waiting on all of the prior auth stuff.

    I'm wondering if you all told people, your friends and such? Also do I say anything to my kids?

    #2
    Hi,sorry you have to be here....

    But welcome.
    When I was diagnosed I did not tell any friends or co-workers.
    I still haven't . I will tell when I absolutely have to , but I choose now to keep my health status private.
    I waited about 3 weeks to tell my children. This was just for me to comprehend things.... what was happening.
    I told my family soon after I told my kids.
    Good luck to you .
    I wish you well.
    Tl-Tr3
    DX'07 MS- on Tysabri-

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      #3
      I was diagnosed when my kids were in there teens, so I waited a couple of days and my husband and I sat them down and told them together. They were afraid, wanted to know if I was going to die, end up in a wheelchair, etc. (I have an Aunt with MS), so they have seen her suffer. Mine, like everyones is different.

      I finally had to tell work, I am an RN who worked in an ICU at a teaching hospital. Everyone was supportive, but I don't know how they would be at another workplace.

      In the end it is entirely up to you and in what you feel comfortable doing. I hope whatever you do, it works out well for you.

      Take care
      Lisa
      Disabled RN with MS for 14 years
      SPMS EDSS 7.5 Wheelchair (but a racing one)
      Tysabri

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        #4
        My dx was confirmed last week

        I've been in diagnostic limbo for the past year and confirmed last week. If you've spent as much time researching as I have, you know we are "lucky". Tragically, many go for years in that crazy-making hell.

        My closest friends knew of my journey. It is always startling to see how even your closest either seem to forget, or, more likely, prefer denial. I've learned a LOT in this past year, not only about MS, but people. Therefore, I make very conscious and deliberate decisions about who I confide in, perhaps, almost selfishly to try to protect myself from being hurt.

        And, yet, to almost negate what I just said-today I went to a drive-thru coffee place that I visit maybe once or twice a month. I am only noteworthy because I often bring my awesome dog and he hangs his head out the back window for a milkbone or 3😄. Even so, this one barista always remembers my coffee order. She asked how I was today and, for WHATever reason, I told HER!?! She was so genuine and sincere in her care and concern-much more so than some friends. She made a heartfelt offer of help-even to help me walk my dog! I drove away shaking my head...

        My daughter, who is 25, yet developmentally-delayed, has known all along. It is just the two of us and there was no way to keep it for her. She has risen to the occasion throughout the journey; being warm, caring, nurturing and eager to help whenever I needed it. She will ask me "So, Mom, how is your MS?!?"❤️

        Moral of story, you just never know, but when you are pleasantly surprised by someone's reaction, it warms your heart for a long, long time.

        I know this isn't quite what you were asking, but I really wanted to share a positive, uplifting story today!

        Denise

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          #5
          Telling family and friends

          I am also an ICU RN diagnosed 17 years ago. I told my children early but was very reassuring about my future. And for awhile this was accurate. Last few years I've been in and out of hospital with relapses so both work and family know. I think it was helpful that I had talked with them previously. My coworkers are great and help me out if I'm having a bad day. Not sure how much longer I'll be able to work because of increasing weakness and numbness in my legs though. Still fighting as much as possible. So tired though!

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            #6
            Thanks everyone for your comments. Very helpful as I try to sort though everything.

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              #7
              I was diagnosed almost 10 years ago, but we just told our kids (ages 8 and 10) a few weeks ago. We found we were starting to talk in code in front of them and we felt they were at an age where they could handle it. We told them in the most basic of terms that the signals from my brain don't always get to the rest of my body. I told very few people for many years, but have recently gone public and have even put together a blog hoping to help someone else who may even be afraid to tell anyone of their own situation. I, also, recently told a virtual stranger. Funny how "strangers" find out before those closer to us. I totally get that.
              RRMS diagnosed 8/2004, no meds

              Acceptance doesn't mean resignation. It means understanding that something is what it is, and there's got to be a way through it. ~ Michael J. Fox

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                #8
                ICU RN here as well...how funny there's so many of us. I was diagnosed a few weeks ago and my copaxone is coming in Friday, I just got the autojector from fedex now. This thing is huge! We're all here for you.

                As far as who I've told, I'm not very good at keeping secrets and wear my heart on my sleeve, so literally everyone who knows me knows.

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                  #9
                  RNs with ms

                  I know a couple of other nurses at my work with ms. We support each other on the rare day we run into each other. It's nice to touch base with someone who knows what you're going through.

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                    #10
                    Some of the MS societies publish booklets just for the children of MSers. Check out the national ms society site- also the one in Australia has great online info for family members and the UK site is good for other types of info.

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