Last reply 1 year ago
Straw poll: rename MS?

Hi everyone

Quick Saturday straw poll:
1. If it was possible, would you rename multiple sclerosis?
2. What would you name it instead?

For me…
Neurological Demyelination Disorder?

“Multiple sclerosis” is such a constant reminder of what we’re up against: it’s not a very encouraging use of descriptive language! For me, it’s the onomatopoeia of “sclerosis”. Or perhaps, you think it’s alright, and what difference does a name make in any case.

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1 year ago

I call it, “A right f**king nuisance!”

1 year ago

A spade is always going to be a spade.

But, I love your word, onomatopoeia. Is that something that you use in every day life?

With literary expertise like that, you may persuade me to call a spade, a shovel! 😉

1 year ago

Hi there and hi to all of you! I do agree with you beefree, the ‘sclerosis’ part of the wording MS is both disconcerting and misleading. NDD is certainly correct and less threatening, somehow less of what a neurologist once told me :”a sword hanging on your head which sooner or later will fall” 😬😬😒😒 NDD really rings more of a truth that can and might be different for each one of us.

1 year ago

A f…… b… disease. That’s how i would call it.xx

1 year ago

Ah @beefree, agreed that a rename would be great. However, NDD is a little too close to MND (motor neurone) if you say it quickly what about simply Demyelination Disorder? Or even DDNS (demyelination disorder of the nervous system)?

Given that our knowledge of and treatment for the disease is so advanced now, I think your idea of a complete overhaul is a great one 🙂 🙂

1 year ago

That it is, wrinkly and mmhhpp.

Thanks teresapascolat, I agree, why not have an accurate description that is also less threatening. I like @vixen‘s suggestions: Demyelination Disorder or Demyelination Disorder of the Nervous System would be a lot better!

Hi @vixon, when I was chatting to an MS researcher this week, she mentioned that it’s likely that there are more than four categories of MS. It prompted us to chat briefly about how relevant the MS terminology will be across a wider set of categories and spectrum of characteristics, including little or no lesion load. She seemed to think that there would soon be opportunities for an open discussion for exactly the reason you give, that advances in our knowledge of and treatment for MS might warrant an overhaul. And because, as suggested by teresapascolat, we might need something that rings more of a truth that might and can be different for each one of us. The preference to get people on treatment early, and recent study findings supporting the treatment of CIS to prevent transition to MS, seems to be bringing the issue to the fore.

1 year ago

Multiple SclerosARSE ™

1 year ago

Naughty C word

1 year ago

Sh1t loads of scar like fings all overt shop or for short SLOSLFAOS

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