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What No One Tells You in the First 30 Days
For anyone newly diagnosed or still trying to make sense of MG — those first weeks can feel like someone dropped you into a maze without a map.
What was the one thing you wish someone had told you earlier?
For me, the biggest shock was how much of MG you only learn by living it. It doesn’t matter how many times we ask “has anyone experienced XYZ?, it just doesn’t sink in until it does…
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4 Replies
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I’m about 11 months in and perhaps strange, but because I seemed to find a whole lot of information about the disease, I was NOT prepared for what a nightmare insurance and disability have been. I’ve told people the diagnosis is mentally challenging enough, but those two things have been awful and I haven’t seen a whole lot in dealing with those challenges. It’s like I received a crash course in exactly how so many Americans are going bankrupt due to medical issues.
A huge win for me though, after being denied 2x for IVIG and 4x for Vyvgart (including a hearing), I just received word I have approval via the My Vyvgart Path program (I guess I qualified because I’m not working). Strange that the approval felt like winning the lottery in this new life.
Part of me wonders if I have actually come to grips with the disease due to the fact I’ve had so much stress about insurance, income and if I can go back to work again (20 years in advertising), dealing with a lawyer now for my disability appeal, MRI for a cancer concern, and have another test in two weeks. Two years ago, my health was pretty good overall.. I had no problem turning 50. Crazy how quick it’s turned.
Apologies for the long winded reply, but it’s basically the outside challenges MG may bring.
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I wasn’t prepared for what my first exacerbation would feel like. I had ocular symptoms for a little over a year before my generalized symptoms started. It was so scary and it took me a while to realize what happened.
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One thing I wish someone had told me is that it’s okay if you don’t have everything figured out in the first few weeks. There can be a lot of uncertainty, and progress isn’t always linear. Taking things one day at a time and learning from others who’ve been through it can make those early days feel a little less overwhelming.
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I wish someone had told me that I wasn’t about to have a crisis. For the first couple of weeks I monitored my breathing obsessively, expecting to find myself in the hospital at any minute. Eventually I calmed down and started focusing on day-to-day issues instead of less-than-likely calamities.
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