Setting ONE goal for MS as a disease in ... - My MSAA Community

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Setting ONE goal for MS as a disease in 2019: NEDA

anaishunter profile image
9 Replies

Sorry in advance if this post seems too brash for some. But I work in an industry (high tech) where an upcoming new year generates a plethora of predictions, lists of goals, and more.

MS getting in the middle of this was inevitable for me (lol). Here is what I think should be a reasonable goal for the community of patients with MS, their caregivers, and the researchers trying to find better treatment: patients diagnosed with MS in 2019 should all be able to achieve NEDA (= No Evidence of Disease Activity).

Of course, this assumes that detection is done reasonably early and that aggressive treatment such as a DMT is started quickly.

I'm writing this to cheer up the new folks recently diagnosed and joining the MS community. There's a lot of hope.

NEDA is my personal goal with MS and I pray every day that all new people facing the monster will get an adequate treatment soon enough.

For everybody, just a quick reminder of what NEDA is:

- no relapses

- no increase in disability (as measured by EDSS)

- no new or active (enhancing) lesions on their MRI scans.

More at: mstrust.org.uk/a-z/neda-no-...

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anaishunter profile image
anaishunter
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9 Replies
rjoneslaw profile image
rjoneslaw

I stand in agreement with you

I was able to achieve NEDA earlier this year after my latest mri and after 6 Rituxan treatments my Neurologist declared me stable. My wish is the same for everyone. Now with Ocrevus being the latest most promising DMD, I believe NEDA is possible. Thanks for the link.

anaishunter profile image
anaishunter in reply toMS_Indestructible

MS_Indestructible Thank you for sharing. This is exactly the type of news I wanted to hear when I was first diagnosed! I was devastated and needed to hear that the disease can be managed (in most cases). All newly diagnosed people should hear this and be hopeful!

MS_Indestructible profile image
MS_Indestructible in reply toanaishunter

I agree and I'm spms

carolek572 profile image
carolek572CommunityAmbassador

anaishunter that is an excellent goal and I love your positive attitude. We should all strive for achieving this, whether it be through DMT, diet, exercise, mindfulness, etc. :-D

MS_Indestructible profile image
MS_Indestructible in reply tocarolek572

well stated

goatgal profile image
goatgal

anaishunter You give me much to think about. I've reached about 66% NEDA without DMTs (but lots of antioxidants). In my case, no relapses and no new lesions, though I still experience pseudo-exacerbations. I've now begun to be curious about how the broken ankle will affect my already impaired gait. Three months in, I'm still in a protective boot and not fully weight bearing on the fracture. I hope to walk unaided again, but ...

anaishunter profile image
anaishunter in reply togoatgal

Thank you for sharing with us such a positive story.

erash profile image
erash

👍 good goal.

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