These things are sent to try us ?

I remember the day of my initial diagnosis with alarming clarity. It was May 27th 2014. The Neurologist (and what a long, misdiagnosed ride it had been to even see a consultant, but I digress), pointed at an MRI scan of my head on the screen.
“That is water in the brain, that’s normal.”
Then she indicated five or six tiny white lines at the rear/ side of my brain. “But these are not .”
I remember thinking how could something so small be so horribly devastating.
She diagnosed PPMS, with the caveat that I had probably been exhibiting symptoms for at least five years. I was already using walking sticks, and have become sadly more dependent on such walking aids. I exercise constantly, especially when fatigued. I refuse to let this thing win. It’s a struggle – especially that I take no medications. Fighting the battle without getting angry – that’s hard!

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Comments

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  • Gordy author
    4 years ago

    Thanks for your comment – I agree that people and their prejudices is one of the saddest things with MS – I suppose it’s born of ignorance, after all as you know, the physical signs are only ( for me, anyway) the awkward movements. No-one sees the 24 hour fatigue, pains and associated problems. To make it worse, it manifests differently for everyone.
    I think many peoplke don’t want to even entertain the possibility that it can strike anyone anywhere anytime. It’s fear that creates ignorance.

    I feel oddly lucky that I was not diagnosed until I turned 50.The fact that you have coped for 31 years is admirable in itself. The conquest of peoples prejudices is a whole other issue though – for myself, I just let it wash over me – life is too short after all, and anger is a trigger, one that I’m all too aware of!

    When I struggle to walk, climb stairs or do any of the things I used to take forgranted, it makes me sad and frustrated, but I also remember that this is very much a challenge.On a daily basis I live in hope of a research breakthrough, but I also understand that life must go on. Every little thing is a kind of blessing – I’m glad that, for now at least, I can still communicate like this – even to strangers across the globe,instantly!
    When I was young, there was no internet, so I’m glad that this technology is available to me at this time, giving me broader access than I would normally have to the world at large.

    I’m rambling now, so I’ll sign off, but again, many thanks and I can only wish you every strength and good fortune!

  • LuvMyDog
    4 years ago

    I was diagnosed with MS 31 years ago, I have never taken any medications.
    I can go for weeks without feeling too bad but then one day I may get up and realize…uh-oh, this is the start of a miserable day or week or month but, there’s nothing I can do but push through it, do what I can, rest as much as possible and wait for the ugliness to pass.

    Most people cannot truly understand what it’s like going through MS flare-up’s and I think sometimes that they think I’m not doing certain things because I’m being lazy and that is miles and miles and miles from the truth.

    Fatigue is the thing that knocks me down. It’s depressing and debilitating, but…that’s my life, I just have to wait, rest and hope it will pass within a few days or a week and I can get back to doing things I must do.

    I’ve had a handicap placard for several years now and many times over the years, I’ve experienced comments from people in a parking lot saying…”you don’t look sick!”…”why are you parking there…is that your mom’s handicap card?”

    It makes me mad and I will confront each and every person who says things like that. I will usually ask them, “oh, are you a doctor, are you a neurologist?” or “What exactly does a person with Multiple Sclerosis look like??!!!!”
    Most people who are ignorant enough to comment on what they know nothing about, will usually back down, some will actually apologize.

    After having this disease for 31 years now, I feel sorry for anyone who is also stricken…and has to deal with ignorant and uncompassionate people of which, there are far too many in our world.

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