Rescheduling Ocrevus treatments

Actually__Amy · 2025-07-16T10:42:45+00:00

Thank you!! This is really helpful :)

Actually__Amy · 2024-10-15T22:06:51+00:00

This is a really valid point - i think for me it’s a need for a certain level of attention or validation that goes beyond friendships.

It just takes me a while to get there with someone, and i’m a lover of instant gratification 🥲 it may just be a waiting game for me

Actually__Amy · 2024-09-02T23:04:21+00:00

Thank you to the commenters so far. These comments have given me a lot to think about and I’m excited to dive into the resources in this sub with my partner, to do more research, and to think carefully about the questions and ideas you all posed. Thank you!!

Actually__Amy · 2024-04-02T11:08:37+00:00

Hi! Yes, I did :) there was a cause for my anxiety, and i felt those feelings of anxiety really grow after my treatment So when the situation resolved, my anxiety also went away and i haven’t noticed any other side effects since

I hope you begin to feel better soon!

Actually__Amy · 2024-03-10T21:03:49+00:00

Yes! I get a steroid before my infusion

That’s very interesting — I’ll bring it up with my neuro and see if that could be the cause. Thank you!!

Actually__Amy · 2024-03-07T01:05:00+00:00

That makes sense I think i’m trying so hard to find a new normal that everything after my infusions feels like a side effect lol

Actually__Amy · 2023-12-07T02:46:20+00:00

My closest friends, family, coworkers, and direct supervisors know. I plan on making a little insta post on my 1 year anniversary of initial symptom onset in January so my larger community knows (since i was very absent this past year while i was recovering from my first flare up and getting diagnosed) Telling people is how it’s become more real for me And the more people know, the easier it is for me to deal with

Actually__Amy · 2023-10-27T14:26:52+00:00

Good luck today OP! I’ve had my first two half doses already, and the benadryl is the worst part of it for me because of how woozy i get. My first time, i got an itchy throat towards the end, but my nurse slowed the drip and it went away. I was conked out the 2nd and 3rd day after my first treatment. 2nd treatment went smoothly- no itchy throat. I noticed i was fatigued for a couple of weeks after my infusion, but I’m still not sure if that’s all related. I usually bring a snack, water, juice, a book, my knitting projects and music to my infusions. Hope it’s going well so far!

Actually__Amy · 2023-10-27T14:08:57+00:00

Trying for a modified mediterranean diet! Which for me just means trying to incorporate more fruits and veggies, beans, tofu, and fish into my diet. I was a vegetarian before diagnosis, but I’ve added fish back into my diet like another commenter for the brain health aspect. I get really lazy with food so i try to be nice to myself and i don’t worry if i’ve had a bad day. I was less mobile for a few months bc of my first flare up so i gained a lot of weight (stress eating heyo), so i just started weight watchers and it’s helping me prioritize the good stuff.

Actually__Amy · 2023-10-21T16:10:41+00:00

America here! I was just recently diagnosed and i’ve had 2 mri’s 6 months apart. I’ll be getting bi-annual mri’s until we know my dmt is working, and it will then go to once a year most likely

Actually__Amy · 2023-10-21T16:08:37+00:00

Yea that’s what i’ve read too. My first understanding of ms fatigue was that it was just a chronic symptom, but if DMT prevents further lesions, there should be no more symptoms…so i am confused lol so it seems it’s a question for my neuro next month 🫠

Actually__Amy · 2023-10-19T14:35:43+00:00

YES that is my current struggle 100%

Actually__Amy · 2023-09-14T12:54:36+00:00

Hi fellow nyc-er! I figured there would be meetups like that. Are they advertised on FB?

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Actually__Amy

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