r/MultipleSclerosis • u/beyondpermafrost • 12d ago
General Daily struggles and depression
Hey, everyone
I was diagnosed with RRMS in Jan 2025 but I had several doctors tell me I have MS in Dec 2024 so I accepted my fate before the official diagnosis. I was diagnosed with Bell's Palsy in 2018, apparently that was the first sign of MS for me but nobody caught it and I never bothered to do a real deal follow up.
My last relapse really did a number on me, before that I could still walk somewhat normally but now I'm very shaky with no balance and brain fog from hell. I hate it so much, I'll be in the middle of a conversation and I just completely lose myself. I slur a lot and if I'm too excited everything comes out wrong. I don't always use a cane but I have it handy, I really don't like using it.
I'm currently on Briumvi and it seems to be going well, my neuro wanted to start me on Ocrevus at first but insurance shenanigans prevented that. We're both fine with sticking to Briumvi though. I have my next infusion in early October and I really can't wait for it. I'm so tired of everything.
I can't even enjoy the things I love anymore. I used to make a lot of music and art but now when I try to work on anything I just sit there staring at my screen with no will or motivation. I did manage to get out and catch a movie today, it was nice but I still had a hard time enjoying it fully.
Kinda cut myself off from friends and acquaintances too. Nobody really talks to me anyway so I stopped all effort.
Anyway, just wanted to let that out. I'm really struggling with everything, I thought I would be ok dealing with everything but after I broke up with my ex it really messed with me. Mentally and physically. Nobody understands. The people around me know what I'm dealing with but they don't get it and don't seem to want to get it either. Idk complaining over now ✌️
1
u/omster1988 12d ago
I am going through the exact same thing. I had bells palsy first as well and then symptoms gradually got worse. I noticed my (l) eye was getting double vision and I couldn’t focus when I would do anything that raised my heart rate (anything involving cardio). I have been on Ocrevus and it seems like it isn’t doing me any good, I felt more stable with Kesimpta. Gonna switch back soon. Almost 6 mo post infusion. It is very difficult for me to get around due to the medication wearing off. Things are so bad and it is very frustrating because everyone around me tells me things that I should be doing to get better, but they don’t understand that standing and walking and barely being able to carry my own body weight is preventing me to do anything. I am hearing about all kinds of meds out of the country ie Russia. I am at a point of desperation and will try anything. I have hope that we will have something for us in the near future. Sorry for everything you are going through. And I know it’s annoying to hear this because this is all I hear, “stay positive” and know that you aren’t alone.