When/how it began

It was August of ’82. I was almost 22, preparing to be married in just a few weeks. One day I woke up with a shooting pain in my eye. Over the next week I began losing vision from the bottom of my eye and it traveled up. My wedding was just 2 weeks away now. In a week the vision was completely gone. I went to a neuro opth. at the Mass Eye & Ear Hosp. He had no idea and said it was probably nerves. I had my wedding, blind in one eye.
This is a VERY shortened version.

Vision slowly returned over the next 8 months. No MS symptoms for 2 years. Had a spinal tap, showed nothing. Had my 1st child. Was fine. No such thing as an MRI till ’87. I had one in Feb ’88. Positive diagnosis. Had child #2 in ’87, still fine. Built a new home, able to do everything, including walking daughter to kindergarten in ’89. Started slowing down, tripping, resorted to a cane occasionally, started IV steroids then cytoxin. Quit the chemo after 6 months, couldn’t stand it…not much disability till about 95/96. Divorced in ’98, he was weak with it. Since then, 3 different times over 9 years, small but malignant tumors removed both lungs, large benign tumor on liver removed, benign tumor in ureter, 2 rotator cuff repairs, third one coming soon & 2 spinal surgeries.

Hard to believe, but I am doing great now, cancer free for 6 years, I do use a walker and scooter for distance. I need to self cath each and every time I have to go. I work part time and no one would ever know a thing when sitting and talking to me. I look healthy and my biggest pain is my shoulder. That’s me in a nutshell. Thank you if you had the patience to read this whole thing!! 🙂 Lauri

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Comments

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  • Lowdramamama
    5 years ago

    Thank you Laurie for sharing!

    I guess we’re the same age because I was dx’d at age 25 in 1985. They did have a couple of those new-fangled MRI’s way back then…Dallas had a total of 3! After experiencing total numbness on bottom of R foot I was going to a chiropractor for a “pinched nerve”. My first 2 boys were 1 and 2 – and their pediatrician basically told me to quit wasting my time and referred me to a well known neuro in Dallas.

    As you know it was very difficult to diagnose MS back then – but apparently what they saw on my MRI concluded the MS diagnosis. I also exper’d a bout of optic neuritis in my L eye which subsided after a round of steroids.

    But MS? Who has TIME to have MS – especially with a 1 and 2 year old??? At 29 I had my 3rd son. Nothing for MS back then…so I completely BLEW IT OFF, took those two daunting letters out of my vocabulary, and never even acknowledged the symptoms I was having – until things got so undeniably BAD in 2010 – I decided I needed to see a neurologist. Yes – 25 years later. My original neuro had long since passed away.

    Got into the MS Clinic @UTSouthwestern Dallas – and was dx’d right off the bat w/SPMS. WAIT…what in the world is SPMS??? I was having to use a cane because R foot and leg weren’t cooperating, had fuzzy vision and the worst for me were debilitating cognitive symptoms! What? MS and cog symptoms??? I was so clueless.

    My awesome neuro wanted me to start on Gilenya as soon as it became available to the public. However I had very active disease going on in my brain and a thumb-sized black hole in my brain – so I was put on a hefty dose of steroids. No change. Next was a “cocktail” of IV steroids that I had to drink in 1 sitting. Think Drain-O. Still no change. Final step that finally worked: 8 rounds of APHERESIS.

    Started Gilenya 11/2010. Subsequent MRI’s have shown no new dz progression or activity. But 3 yrs later – I’m dealing w/all the collateral damage from “innumerable” lesions and “thinning of the corpus callosum”. I walk w/out a cane – but pretty slowly and for very limited stretches. My cognition SUCKS when I’m experiencing ANY kind of stress…and a few more annoyances like fatigue & depression…

    But this is NOTHING compared to what you’ve bee through!!! When I read the blogs of so many with MS – who have to deal with so many issues – my heart breaks. I honestly don’t know if I’d have the strength or courage. I applaud you and countless others who truly know suffering. God bless you Laurie!

    Stacy

  • Lauri author
    5 years ago

    Thanks so much Lexine! As they say, ‘you do what you gotta do’ 🙂 I am actually going for another shoulder repair on the 13 of this month and hopefully I will let it heal properly his time!! Thanks for your note!! I hope you are doing well!! Lauri

  • Lexine Darden
    5 years ago

    Thank you Lauri for sharing your story. You are a true survivor and fighter and an inspiration to all having to confront health challenges–and yours have been mega.
    Be well, friend…
    Lexine

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