Mary,
I’m relieved you too had concerns about the ethics of the question, and that you want your daughter to have proper answers, because I wasn’t sure, from your initial post, whether you thought it would be kinder not to tell her!
Perhaps it would, in a way - I can certainly understand the desire to shield someone from bad news. But the way to Hell is paved with good intentions, as the saying goes. If, in a bid to protect someone, you also deny them the freedom to make their own decisions, based on a full understanding of the facts, how can that possibly be best for them?
In days gone by, when there were no available treatments (even of symptoms), there might perhaps have been a stronger case for not telling someone something there was no help for. But now there is a wide range of both orthodox and complementary therapies to consider, I think it’s much harder to justify why anyone shouldn’t be told, and allowed to make up their own mind.
I suspect it might even be actionable at law, if a patient discovered they’d been denied information about their own health - information that might have led to treatment opportunities, or influenced key decisions. The only possible grounds I can think of would be if the patient had expressly indicated they wouldn’t wish to know, or was thought to be at risk of harming themselves or others, and the news might tip them over the brink. But even if it was the latter, I think they would have had to have shown some tendency in that direction. It wouldn’t be enough for a doctor simply to assume they “might” have an extreme reaction, with no evidence to support it.
Anyway, as others have said I hope it turns out not to be MS. It might turn out to be something more responsive to treatment - in which case all the more reason to know, as your daughter might be suffering unnecessarily, from something that could be fixed!
I do understand your worry. I don’t have children myself, but two little nephews. Knowing, as I do, that MS is in the family (I’m not the first), I sometimes have bad vibes about the future for them. This sounds mad, but I’ve always had a sort of premonition I would someday have a connection with a disabled child, but never that I’d be disabled myself. I do worry about the boys. The older one is already clumsy and awkward in PE lessons, just like I used to be. I have no proof at all that my childhood difficulties were anything to do with my subsequent development of MS, but it does make me wonder, as there seems to be quite a lot of overlap.
I do think, though, that each passing generation has a better chance than the previous one. Your daughter is still young, as are my nephews. If any of them were diagnosed today, there’s a much better chance of a cure being found in their lifetime, or at least, a really successful management technique. I’m already 45 - don’t think it’s going to happen for me. But I’m much more hopeful for those who come after.
Tina
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