Triggers in MS

Hi. I’ve just read part of the story shared on triggers of MS and can fully relate to the fact I too had meningeal cockle meningitis as a baby. My parents were given no hope & I was given last rights.

Fast forward 50 years and here I am!? Yes I have MS. Some days I find it frustrating as I look so well… how can I be having a bad day? Nerve pain and short term memory are my worst symptoms.

Yea life sucks for lots of reasons, but I get back up brush myself down & get on with it. Learning all the time. I’m now living with MS for 21 years, it doesn’t get any easier but is still manageable. Rant over.

Many thanks,

Lavinia

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Comments

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  • Erin Rush moderator
    6 months ago

    Wow, Lavinia! What an incredible story! I am so glad you survived that bout with meningitis.

    I don’t think you sounded “rant-y” at all! You were just sharing your experience and your thoughts.

    I am glad you took the time to share just a small part of your story with the MultipleSclerosis.net community.

    Thanks for sharing with us!

    Best, Erin, MultipleSclerosis.net Team Member.

  • 11Little
    6 months ago

    About MRIs
    My last MRI was over a decade ago. I am in a support group. Many members have regularly planned MRIs. When I am asked if I am going to get one I tell them probably not. If monitoring their progression of MS is their desired choice then who am I to tell them otherwise. They asked me how I monitor my progression of my MS I tell them by counting my steps to the paper box each morning. For over fifteen years I have taken thirty-one steps. If it.takes more I know I am having a possible exacerbation. Just this past March my steps number has increased. My steps are now between thirty-three and thirty-five. I would think this increase may indicate a possible increase of scar tissue. I do not see the need for a brain scan to tell me there may be more lesions. It saves me time and money. I see no upside to having knowledge about the number of lesions on my brain as long as there is no way of treating them. I am comfortable with my step counting method for interpreting the ebb and flow of my MS progression. I take only gabapentin for pain. I take it three times a day and sometimes a fourth of my activity of the day has increased my foot pain. My mental toughness and lifelong competitiveness serves me well. I take on MS as I took on my past
    opponents as an athlete and coach for over 50 years. I play to win. I trust my will to win keeps me ahead of my MS progression.
    Besides after thirty-two years since my diagnosis at the age of thirty-four I am still walking to my paper box each morning.

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