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New here not sure I belong here

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    New here not sure I belong here

    Been lurking on these boards on and off for about a year. I was “diagnosed” st party’s day of 2018. I went out, got very drunk, fell and hit my head, and had an MRI. Long story short they saw lesions and had me come back for lots of other testing and it was decided I had this. There’s a post in the general boards that goes into more detail.

    Not even sure I really belong here since I’ve never had any issues or problems from this disease. I’m still convinced I was misdiagnosed and it’s all just a scam to keep them free from a lawsuit lol.

    anyway I’m a licensed head surgery technician at a surgery specialty center. I love my job and the thought of having to quit on day because of this kills me.

    not much else going on in my life because well you know corona ruined everything. But if it wasn’t for corona I was going to be obsessed with disturbed and go see them at least 4 times this summer. Then I had a bunch of other things lined up. Now all I do is play video games with my husband. At least it wasn’t the ms that took away my ability to go to concerts, not that corona is exactly my idea of a dream world.

    #2
    I'd say welcome but it's not really a club you WANT to join. I understand how you feel. I was diagnosed march of 2018 as well. I lost feeling in half my body that kept getting worse. Went for my MRI and discovered I had a few lesions. When i went for follow up MRI in december i thought for sure they were going to tell me i was misdiagnosed and i'd walk out with 8 months worth of fear and worry. Instead i was told i had more lesions.

    Besides that episode in March of 2018 which took about a month to recover from i've had no major episodes. However i live with fatigue daily. It's my worst symptom. Also when i get over heated i can tell i need to chill out and relax.

    2 and half years in and i feel as i don't belong in the MS group because i'm "new" and i don't have the same experience. However i've also read a lot which has helped on the journey. Not sure i ever want to feel like a "veteran" of this but i feel as if i don't belong in the "I HAVE MS I"M STRONG" club since i don't have the experience as others but i do remind myself it is something i am dealing with. i'm just lucky to be in the spot i am right now with that i am. I don't take that for granted.
    Best of luck. Did you get a follow up MRI since that would have confirmed? Did you go on any treatments? I'm on my second (mostly because the first just wasn't working for me lifestyle wise).
    Dx March 2018; possible first episode: August 2011
    Tysabri May 2018-June 2019, Mayzent July 2019

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      #3
      I’ve had two follow up mris and both showed the same with no changes at all. They did a spinal tap to confirm it, but I really can’t think of anything symptom wise I have.

      I honestly some days forget I even “have” this since the only change I made was I stopped smoking cigarettes for the most part. My husband has to remind me some days to use my injection because I honestly don’t think about this since it still doesn’t seem real. I’ve read about something called beign ms and it says the person never has issues or may only have one flare ever, but it can’t be diagnosed that way until at least a decade or more has passed.

      I still honestly think that I was misdiagnosed but I don’t know what else it could even be since they ruled out a bunch of other things.

      Comment


        #4
        It looks like you've had an MRI and a lumbar puncture. Is your doctor a neurologist? Or an MS specialist?

        Yes; those are both tests that help to dx MS. And rulig out many other copycat illnesses (differential diagnosis) is als o a regular piece of the diagnostic process.

        I'm glad to hear that you are not experiencing symptoms. I encourage healthy eating, moderate and regular exercise, stress management (meditation, yoga, positive relationships, meditation, etc .

        ~ Faith
        MSWorld Volunteer -- Moderator since JUN2012
        (now a Mimibug)

        Symptoms began in JAN02
        - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
        - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
        .

        - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
        - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

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          #5
          The doctor I was seeing was a neurologist and ms was listed as one of the things they specialized in. They retired and since I am not comfortable going to a drs office ( corona) I don't have a new one yet. I have enough medicine refills to last me until July of next year, and I am also not planning to get another MRI so I am OK not going to the DR. I don't need to perform things that make me feel like I just got pulled over for a DWI. (Walk straight , how many fingers am I holding up , touch your nose).

          Now that we have finally got our spare bedroom back , I plan to order a treadmill and some weights. I miss working out , but again (corona) so I am not going to a gym anytime soon. Hopefully this virus will go away soon and we can all get back to our lives.

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