@I have had RRM MS since 2000 and was told I'm now secondary progressive since 2023. It feels like it's become quite aggressive again interfering with work. I live alone. I've pushed to have my consultant appointment moved forward. I've been left mostly by myself with no constructive support in place. I'm not on disease modifiers. I've done so well but let's say since moving services has been obismal. I'm always pushing forward and challenging myself, but feeling like I'm loosing grip on reality. I'm that exhausted with the MS is anyone same and any advice to help is appreciated on Shift.ms

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@stumpylumpy

27 Feb 2025 06:02Last reply 3 Apr 2025 20:38

I have had RRM MS since 2000 and was told I'm now secondary progressive since 2023. It feels like it's become quite aggressive again interfering with work. I live alone. I've pushed to have my consultant appointment moved forward. I've been left mostly by myself with no constructive support in place. I'm not on disease modifiers. I've done so well but let's say since moving services has been obismal. I'm always pushing forward and challenging myself, but feeling like I'm loosing grip on reality. I'm that exhausted with the MS is anyone same and any advice to help is appreciated

First posted on the Shift.ms app

@EJCrager

Hey from across the pond. I have been diagnosed since 2023 and I can say that ocrevus, a disease modifying therapy, has restored some quality to my life. It has slowed progression and I don’t have nearly as many flare ups.

27 Feb 2025 14:15

@JJPac

I was dx the same year as you, I asked my neurologist yesterday if I was progressing to SPMS now and she said no, “the last time I saw you a few months ago, you said you can walk 20m and now it’s 40m so, in a few months again hopefully it will be 60m“. Sometimes I think if you grade your MS it's almost certainly like you’ll be looking at a downward trajectory. Best to think you’re always in a state of plateau and you just need to tweak a few things when it feels it’s going wayward and get it back realigned. ↔️

28 Feb 2025 01:01

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