How I First Dealt With MS VS Now

How I First Dealt With MS VS Now

Have you seen that diaper commercial where the mom is looking to hire a babysitter for her first child and she is interviewing a lady with ten years experience and a masters degree in early childhood development but still the mother is disappointed because the lady does not have a PhD? Then for her second child, the mom is handing her baby off to some high school girl wearing all black, heavy makeup and a nose ring? “By their second kid, every mom is an expert”. Well that is sort of how I feel about my multiple sclerosis.

When I was first diagnosed at the age of 20, I was in contact with my doctor as soon as I started experiencing any small difference in my health. Some pins and needles? I need Prednisone! Any little difference in my body and the sirens would blaze as I panicked to get some form of treatment. Oh my God! My left ring finger is numb! Get me to the hospital and administer 1,000mg of Methylprednisolone over 2 hours for 5 days stat! But that was then, now? “Hmmm… my right leg feels kind of limp… I’ll give it a few days and see what’s up” or “Aw man, my vision is extra blurry today, well, c’est la vie”.

I am not sure if I have just become more reckless or if I have developed a better understanding of the characteristics of this disease. I would like to assume it’s the latter of the two haha… Now instead of getting that feeling of panic I get the feeling of “ok, it’s not really that serious”. I really do feel like I know the limits of my body now and I can tell if it’s just a small, temporary flare (known as a pseudo exacerbation when symptoms last less than 24 hours) or a full-blown exacerbation/relapse that is going to require physical therapy to get back to almost as good as I was before MS came in with a sledgehammer to do what MS does. In fact, I swear I can literally feel the difference before enough time has passed to determine what it is on paper. When it’s going to be a full-blown exacerbation I feel like my insides are “on fire”, not like I am hot, like all my wires are short-circuiting and burning up. Maybe it’s just in my head? But so far I have usually been right but never say never, right?.. But either way, my point is this, I start experiencing something and rather than contacting my doctor right away I find myself trying to decide if it really even needs immediate attention. I imagine this is how a lot of people are after living with MS for so many years but honestly? I don’t know, I have never thought to ask.

I can also say I would rather save the steroids for a more serious relapse so that I do not build a tolerance to them and so they will work better when I really do need them. Also, I just don’t want so many chemicals running through my system; after years of IV medications, injections and pills I have started to feel like it is a bit unhealthy because after all, this stuff really is not supposed to be there. Our bodies did not evolve over thousands of years with all this crap in us; you wouldn’t have found a caveman popping a handful of pills every morning right? I am not saying “all medications are poison”, no, we need this stuff but part of me just wants to feel “clean” because right now I feel like if there was a zombie apocalypse and I got bit? That zombie would just die because of all the crap I have running through my body. I am just saying that like anything else, too much of a good thing can be a bad thing; moderation is key.

Do you find that you have become more “relaxed” about a flare up than when you were first diagnosed? Share below!

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Comments

View Comments (10)
  • JMad
    3 years ago

    I just had this same conversation with my mom yesterday – you can’t run to the MD every time, the cost alone would be an issue. Why is Tysabri out? Unfortunately for me I’m JC+ and am very hesitant to start any DMTs (dx 04/15). I’m in awe (and jealous) of ppl who can put that worry aside and take meds.

  • Matt Allen G author
    3 years ago

    Tysabri is out for a couple reasons, I was super JCV+ AND it sort of just stopped working, I probably developed a neutralizing antibody which basically mean your body starts producing antibodies like you are sick but instead they attack Tysabri making it not work. PLUS, I did Lemtrada since then so now I can’t do Tysabri anyways, I would probably just get PML and that’s it.

  • Carol
    3 years ago

    “Saving the steroids for a more serioous relapse” could backfire on you if the timing doesn’t work out and then you would suffer really painfully.

  • Matt Allen G author
    3 years ago

    OH IT HAS backfired on me a couple of times, I don’t recommend it but it’s just so often for me!

  • jackie5275
    3 years ago

    I pretty much deal with it the same now as then. I was diagnosed in July, 2009. I’ve always stayed on my treatment, stuck with Vitamin D, exercised, & ate a healthy diet. I don’t get relapses too often. I don’t take steroids because my neuro said they would increase my blood sugar. I’m diabetic, so that won’t work. Otherwise, I’ve pretty much “stayed the course”.

  • Matt Allen G author
    3 years ago

    Yeah, I don’t miss the insulin shots; I have (for the most part) maintained a lot of my “staying healthy” habits but I relapse so much that I don’t really run to the doctor anymore, I just need to find a treatment that works for me since Tysabri is out of the picture

  • goshling
    3 years ago

    I don’t like the steroids either, but from what you say above, I’m not sure you fully grasp the purpose of them for MS. It’s not about “building tolerance” it’s about avoiding serious long term side effects. And the short term side effects. Your entire final paragraph there about cavemen & chemicals doesn’t really mean anything.

  • Matt Allen G author
    3 years ago

    lol I don’t think YOU really get what I meant about building a tolerance. I mean in the sense that at first they worked great but after years of using them they stopped working so that makes me nervous about using other medications that work well, what if the same thing happens there? I am screwed! So I try to use them as little as possible so I always have SOMETHING that still works.

  • goshling
    3 years ago

    Yes, sounds very familiar. I had a a history of migraines, and other random issues, which, in hindsight, I wonder may have been early symptoms. Sometimes even in primary school I’d have visual disturbances, and if someone made me laugh a lot, i was unable to pick up my pen & write, I’d just lose all control of my hand.

    I had initial Dx just before my 29th birthday.
    I thought I was having a migraine, but it didn’t go away, next day went to GP, cut a long and infuriating story short, optic neuritis, hospital, blah blah blah.
    The first few years were the worst: I was single, had a young daughter, and MS to me meant spasticity, blindness, incontintence, wheelchair, misery.

    Luckily my MS is very mild and slow progressing. It annoys me daily, but it could be much worse, I used to get very upset about weird neuro symptoms, now I’m totally blase.

  • Matt Allen G author
    3 years ago

    I sort of feel the same, blase, I am just getting over a relapse and I didn’t even really tr that hard to talk to my doctor, I just rested, I feel so whatever about t, but I know that is irresponsible of me…

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