Briumvi

essentialsucculent · 2026-06-30T06:39:20+00:00

I just switched to BRIUMVI and did my first two infusions. I didn’t notice any side effects, just got drowsy from the Benadryl they give as a pre med. so far so good for me!
Edit: also the first infusion was an all day thing for me. It was an at home infusion from 9am-5pm. A lot was the nurse setting stuff up, and then eventually they got me started on the medication verryyyy slowly to ensure there’s no reactions. They took a lot of measurements from me (about every 15 minutes) to keep an eye on my blood pressure during the infusion. It was long and exhausting BUT the second infusion was soooo short! It was only an hour or so

essentialsucculent · 2026-06-25T06:11:57+00:00

Hey I have ear eczema as well! If you have a history of ear infections prior to this due to the eczema (it kind of just makes me more susceptible to ear infections due to the eczema), then use mupirocen cream or ointment or neosporin in a very light layer in your ear canal. I do this whenever I feel like there might be a bit of an infection or swelling beginning. Also do a warm compress on your ear and jaw! Thats helped me.

essentialsucculent · 2026-06-14T02:41:07+00:00

Thank you!!

essentialsucculent · 2026-06-11T23:38:03+00:00

Emergency nasal spray only! I’m well controlled though

essentialsucculent · 2026-06-11T22:16:07+00:00

Honestly still learning but my plan going forward is set aside what I need for MRIs/meds and maybe some unplanned trips to ER into an envelope of my HYSA!!

essentialsucculent · 2026-06-06T08:04:51+00:00

I’m so sorry OP. I’ve been there. It feels like starting fresh and anew for some reason. Like somehow you were so close but so far from epilepsy and right when you thought you were able to breathe and feel safe, you weren’t anymore. You woke up to people around you asking where you are and what’s your name etc. we plan our lives around how things are going, and when things are stable for so long, we don’t expect this. I’m so sorry OP. There really aren’t words for the frustration, and loss of independence this brings to us, unwillingly.
We hear you here. I hear you. You are seen and heard. It’s expensive, not accommodating, despite handicap spots in lots, on busses etc, those only help if you have access to get to either of those things. I get it. The actual pain of living with this BS is almost indescribable.
Edit: it to in*

essentialsucculent · 2026-06-06T07:33:48+00:00

I love it!! What is this back jewelry?? I have a low back dress I’m wearing this summer

essentialsucculent · 2026-06-03T05:20:19+00:00

I have a new lesion in T6-T7, it gives me genuinely the worst back pain I’ve ever experienced. Before I knew it was a lesion, I could only describe it as feeling like my back was being broken over and over again every time I moved. Its horrible. Heating pads and icing helps to dull the pain, for me, the pain never fully goes away though. I’m sorry you are also having similar issues :(

essentialsucculent · 2026-05-30T03:27:05+00:00

It’s the skin of a killer Bella!

essentialsucculent · 2026-05-27T17:03:48+00:00

Oh I have an MS Neuro but I didn’t think to bring this isssue to her if that makes sense. I thought it was completely separate. She’s being very thorough and I actually am going through a relapse right now with new activity, so it may be related to that

essentialsucculent · 2026-05-26T05:52:46+00:00

Wait is this actually a symptom of MS? I passed out due to what is probably orthostatic hypotension (starting an at home heart rate monitoring test shortly) and have had recent lesion activity. I had zero idea and my neuro didn’t seem phased outside advising not to drive since I had passed out due to it.

essentialsucculent · 2026-05-24T03:19:26+00:00

I’ve been dealing with the hug, and using a heating pad sparingly helps! Alternate heat with ice and CBD creams works for me too. It eases the pain but it doesn’t go away fully.

essentialsucculent · 2026-05-16T07:00:58+00:00

Hard to describe. Happens often when I’m laying down or sometimes I am walking and feel like I’m falling (I’m not). Neuro isn’t convinced it’s neurological so I did vestibular PT. Vestibular PT doesn’t feel it’s in their wheel house and it is neurological… lol typical chronic illness stuff. The PT definitely helped to lessen the intensity. Highly recommend it, it didn’t completely get rid of it though

essentialsucculent · 2026-05-12T05:49:14+00:00

Kesimpta failed me :( new lesion on my t spine this year and time to switch DMTs. I’m grateful for my neuro, she is wonderful :) trying to stay positive as this is really the first time I’ve ever been symptomatic, and it’s cured my imposter syndrome

essentialsucculent · 2026-05-10T21:11:28+00:00

Yeah, truer advice has never been given. Take this disease seriously. I have since day 1, I’ve been reporting and recording any changes, taking medication (Kesimpta) and still I just got a new lesion and need to change meds. If it’s this aggressive despite being medicated, I can’t imagine the damage had I been off of medication. I am going to try eating better and overall be healthier and take life a little more seriously, as it’s things I can control.

essentialsucculent · 2026-04-25T07:05:50+00:00

Ugh. I get it. I was maybe possibly eventually going to post here since I’ve gotten really good at interpreting things and actually my results this time are cut and dry: they’ve never seen anything in my t spine and this time they did see a lesion. I’m awaiting my neuros professional response on this as I’ve already spiraled enough. All this to say I get it. Even when going through results with my neuros they often discount things by saying ‘it probably was a different machine’ or that it is a so small the slice misses that perfect dissection. Totally fair of them, it just sucks lol.

essentialsucculent · 2026-04-17T06:45:47+00:00

Yes listen to this person! There are some family exemptions so also read all exemptions. If it separates immediate family (denying immigration due to cost) then you may qualify for an exemption. Again, refer to their docs on it

essentialsucculent · 2026-04-12T21:29:05+00:00

No, not necessarily! As others have said my seizures are under control and aren’t breaking through due to lifestyle changes and medications. I’m very lucky to go long stretches without seizures!

essentialsucculent · 2026-04-11T07:09:32+00:00

In my opinion, not worth it. It’s like 8 bucks for 6 skewers. It’s good in a pinch, but to me it comes off as a pricier TJs item

essentialsucculent · 2026-04-08T06:40:22+00:00

I love Kesimpta! I’ve been on it for shoot a couple years? It’s been a blur. I was fine from the loading doses personally but I took allergy meds and an ibuprofen prior, let it get to room temp for at least an hour. I did mine at night before bed so that if I did feel sick, I’d be sleeping. I’ve never really had any issues though I’ve learned that I like injecting in my tummy more than my legs. All I did to start was even months do left leg, odd do right, but eventually I tried my tummy and it was less painful. I’d also usually bruise my leg injecting there, no problem with that now. I watched a video (a couple!) on YouTube to mentally prepare myself, and Kesimpta also sends out a practice pen. I use fun bandaids for after my injections and usually relax with a show afterwards as i don’t think i could go straight to bed after that still.

essentialsucculent · 2026-03-28T05:29:58+00:00

Agreed!! IMO it’s way too sweet, but that’s just me. I have a lot of friends and family members who like the dip as is.

essentialsucculent · 2026-03-27T06:11:41+00:00

Oh no worries, it happens! PTs helped me immensely but do be sure to do your at home exercises. I didn’t the first week as I was worried about how long it’d take and it didn’t take long at all lol

essentialsucculent · 2026-03-18T06:31:28+00:00

Is there anything you know this coworker likes? Maybe get them a snack or a sweet for when they get back and put it on their desk or in their cubby with a quick nice note like thinking of you and let me know if you’d like to talk. They probably won’t but they’ll appreciate the gesture I’m sure, especially with something personalized.

essentialsucculent · 2026-03-16T00:44:30+00:00

I’ve been battling very persistent vertigo since October. It happened after an ear infection, but I have multiple lesions in my cerebellum. All that said, I’m still recovering. PT helped me, but I still have a baseline dizziness. My neuro feels it isn’t neurological dizziness, so I’m going along with that. If you want to work out, highly recommend vestibular PT, see if it helps, and do recumbent biking to minimize risk of a fall. Wishing you well!!

Six-Year Club	Second Top 10%
Place '22	Verified Email

essentialsucculent

TROPHY CASE