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MS Diagnosis, Courses, and Stages

Deciding to Diagnose

  • By stilltruckin

    First, let me say that I have visited these kinds of sites many times, read articles or posts, and started writing a post myself. But I’ve stopped and deleted what I wrote every time. Maybe because writing it down adds legitimacy to my problems or maybe because I’m scared. Maybe those two reasons are actually the same. That being said, I’m here now and hoping to find some advice and solidarity.

    Secondly, this may not be the correct subgroup of the forum for my post, in which case I apologize.

    I am a 25 year old woman who is not currently diagnosed with MS. I grew up caring for my mother who was diagnosed herself around this age. I have lived abroad teaching in different countries for the last 3 years and really enjoy the lifestyle of being able to travel, learn new languages, and get paid to do it! I love my current life and would do anything to be able to keep globe hopping, which is why I have avoided seeing a doctor despite having experienced MS symptoms on and off for years.

    In the last year I have noticed an increase in the frequency and severity of my symptoms, especially in regards to my bladder, vision, and limb control. So far I have not had my safety seriously jeopardized, but it’s becoming more and more apparent that even when I’m well-rested I am not always in full control of my body. Which is dangerous in any situation, and further amplified by my environment.

    I have difficulty walking straight and not tripping on well-paved roads and sidewalks – and those are not a part of my normal life. I trip often, even though I’m so aware of my walking and make sure to pick my feet up high enough. So far I’ve caught myself every time, but I’ve had close calls. My job is also very physically demanding. I have to stand and lead large groups of students for hours every day. More and more often I have vision issues in the classroom, sometime barely being able to finish a class after an “episode” where my vision is so blurred I am no longer able to distinguish individual faces.

    I’ve never written this far before, I’ve always deleted what I’ve started as soon as I try and put down recent specifics. Just looking at it written down makes me feel so dumb. Of course I need to see a doctor, of course I need to start the long and taxing journey toward a diagnosis, of course, of course, of course.

    But I can’t commit to it. I can’t admit the possibility of needing to slow down, of being incapable of living my dream life long term. I can’t convince myself to move back to the US and seek help. I can’t even tell my mom what’s happening.

    No one in my life, abroad or at home, knows that this is something I struggle with, that fatigue and pain are (and have been) a huge part of my daily life. If my friends knew they wouldn’t believe it. If my family knew they would demand I come back. But being somewhere new and wanting to see everything about it are the best things in life for me. That’s the only reason I ever really want to get up and go outside when my body is screaming that it’s exhausted, no matter how much rest I give it.

    Having made it this far in the post for the first time, I honestly don’t even know what it’s purpose is. I know there is no right answer. I know that short of a series of tests and conversations with experts there isn’t even a way of confirming that I even have MS.

    I don’t know what I’m looking for, I just had to get this story out of me. Because it’s not just a story, it’s my current life. It’s what I think about while trying to go to sleep (but of course not being able to because I need to use the restroom a million times), it’s what I think about every time someone asks “how are you?” But it’s never something I’ve said out loud.

    This is the time of year that I decide where I will live the coming academic year. For the first time I’m hitting a wall in trying to decide between what I want and what I may have to admit to myself I need.

    So I guess that’s it.

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  • By looey

    I was diagnosed at age 30 with RRMS. 22yrs. later, 2 kids, 4 relapses, lots of trial drugs, I am no longer a pharma fan. You sound a lot like me at your age! I used to be a teacher for 12 yrs. Since ‘retiring’ the job and making a lifestyle that works for me I have become relatively stable. Last Spring I was told it was now Secondary Progressive MS. I am more fatigued and my lower-legs hurt when standing now. I always wonder why? What did I eat? (I just finished Terry Wahls Protocol book)
    I am thinking about trying the oral therapy now.

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  • By Lisa Emrich Moderator

    Stilltruckin,

    Thank you for sharing your story. I honor the courage it takes to do so. It must have been difficult caring for your mother and watching how MS affected her, and then scary to think what might be going on with you. Sounds like you are able to handle the varying symptoms rather well. Although you are not sure that you could be diagnosed, it would be good to continue seeking the guidance of a medical professional.

    I hope you continue to explore and enjoy new places. Sounds very exciting.

    Best wishes,
    Lisa (site moderator)

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