"I'm exhausted from taking Tecfidera pills; they serve as a daily reminder of my MS due to my forgetfulness. At the science-based hospital I'm in, they've presented me with three options: Tysabri, Ocrevus, or Rituximab.

The latter option is part of a study comparing its effectiveness to Ocrevus, and it's significantly more affordable."

Anyone has experience with Rituximab?

Tell me

Hello again, before I start I should apologize for my shitty grammar, english is not my first language, that being said so Is there any drugs that will help spinal lesions symptoms? I have a dr that you only visit her about 5 min in every 4 mounth and its always a big challenge for me to ask anything from her, never cared to explain to me my mri, or doing physical exam, and I stuck with her for now since there are few ms neuro available in my city, and she is really bad temper person, and since she is busy she make wrong assumptions about their patients all the time, so my new strategy is to know what I need and asked for it, like for tingling, for my full of lesion spine, and for my unconcentrate mind what do I need? And also wanted to know should I change my DMT? My llehermit symptoms came back recently, uh you should know that my DMTs are not like yours, they dont import the DMTs here instead they make a copy version of em, its more profitable for insurance and such, without any fda approvment, just inside standard stuff approval, that being said should I change my DMT? I'm currently on inside brand of Dimethyl fumarate. Seems from my last mri nothing had change but I'm reading I have also lesion on thoracic spine which they didnt mentioned it in my before this MRI, any way dr told me nothing has change 🤷‍♀️ in general I am doing ok and really afraid to do somthing and make this normal go away, it is just my llehermit and tingling is back, so what do you think? What do I need? What should I do? I really appreciate your insight

Hi everyone. First time poster here. I was diagnosed late last year and haven’t been doing so well mobility wise. I have found double handled mugs to be useful, and and automatic can opener. I am a single mum so I really need suggestions. I fall a lot so use a stick but it really hurts my wrist to do so. I struggle to walk etc. any suggestions to make life more manageable would be so appreciated. Also any links to sites would be great. There’s so much out there my mind is boggled and I am so overwhelmed. Hoping that actually asking others with MS and their opinion of things will help.

Vent, curse, get it off your chest. Share what sucks this week, this minute, this hour… MS related or not, this is the place to let it out!

^(Weekly Sticky Threads:)

^(Monday: Bad News Bears)

^(Wednesday: Off-topic Discussions)

^(Friday: Good News/Weekly Triumphs)

I was wondering if anyone has experience with this drug? I've been having vison issues and the normal steroid regime only helped for a couple months and my insurance finally approved cortrophin after several appeals. My neurologist seems pretty high on it over iv steroids so I was wondering if anyone has opinions on it. I'm still fighting insurance to get on kesimpta, but I'll take this victory for now

I’m spending the night in the room with her. She is not hooked up to a heart monitor, blood oxygen, or bpm. If I weren’t here, she wouldn’t have even been able to have a sip of water or bed adjustments. Is this normal? I want to say something but I’m afraid of making the nurses see us as a nuisance. I just can’t believe it would be okay that not a single person has even walked in to check vitals in seven hours. We are in the US.

I've had sporadic attacks in the past, and I had one again this morning.

Anyone had any luck dealing with this? It's the worst pain I have ever experienced, fortunately only a few spikes and it backed off. I'm currently off Baclofen because of side affects.

TN is called suicide disease for a reason. I'm not sure I could live with this if it comes to stay.. 😥

Noticed how important incorporating weight training has been for me the past couple months. Got two questions for the sub members:

1. Do you notice significant strength loss when not training for a while?
2. How often a week do you lift weights / resistance train?

This might not be super relatable (or maybe it is) but I really struggle with the lack of control/being told how to live and for some reason I am so resistant to the idea of being expected to completely change my diet and exercise since diagnosis in August 2023. I just started my first DMT (ocrevus) and I’m in Australia. I know eating healthy and exercising is obviously great advice but I’m becoming so resentful of what feels like the extra pressure that comes with any lifestyle advice since my diagnosis. Other than all the medical interventions I really haven’t changed my lifestyle all that much… not sure how I feel about it but I just have a general bad response whenever anyone (outside my care team) wants me to take on even more changes. Anyone else?

Has anyone had to switch careers completely? I’m currently in a machine shop but my legs are slowly failing and I don’t want to wait u til the last minute to find a new career. I don’t have any college education or certifications or anything like that. What have yall done in this situation? I can’t exactly go to school as I’m the only income in my family so my way can be with my special needs child.

Hi there! 29 year old female diagnosed with MS for around 2 years on high efficacy med right away.(rituximab) little to no symptoms -mild optic neuritus that pretty much fully healed, mild-moderate fatigue -Tinnitus. Curious if heat doesn't bother anyone else? I absolutely love a hot bath, also just went to Mexico for 10 days and never felt better while I was there. I've been told to stay away from heat but it doesn't bother me at all. Is that just a general thing or are there lots of people out there that aren't effected by it whatsoever?

i have physical therapy tomorrow.. i've never been to anything like this before.. are there any particular things i should know? any red flags in therapist? any particularly good things you know work for herniated disc pain and/or nerve pain i should suggest to them?

Does anyone take daily aspirin for fatigue? My neuro said I can eventually try 650mg/day if my first Ocrevus infusion or Cymbalta does not improve my fatigue. I’ll say I do have some pause about using Aspirin long term, please let me know how it’s been for you if you use it!

I’m not sure if I just have bad circulation or whether this is my MS. I was diagnosed July last year. Now in the mornings I like to sit on my back steps and have my coffee. Also sometimes in the afternoon. My legs are in a position where they aren’t crossed but like in front of me, bent, as you would be sitting on back porch steps. For some reason now they just go dead after about 15 mins. I just had an episode where they went so dead I couldn’t move. I tried to get up but my legs weren’t having it, I couldn’t weight bear on them. So I sat there for a while thinking wtf is this. I tried again. No luck. I ended up dragging myself on the ground, back through my back door and into the house where my laundry is (which is near the back door) and sat there for a while. After about half an hour I was able to get on my knees. Ten mins later I used my washing machine to get up. Success. But I couldn’t take a step. After standing for a bit more I was then able to walk again. I have no idea why this happened. It’s not like I was sitting crossed legged. I’m not overweight and circulation isn’t generally an issue. But this dead leg thing is happening more frequently but this was by far the worst it happening. Has anyone else had this happen? Is this MS? What the hell is going on with my legs.

Is this a sign this may be my maximum and its only going to be worse from now on? I was diagnosed June/July last year. But I suspect having it since te years. Is there chance for improvement?

I cannot work full or even half time, to unreliable for the bosses. But im lucky i live in a country that gives me money evry month beceause im sick. Thing is, its not alot of money, enough for housing, food and so on. But i want to buy my kid and girlfriend some things and stuff ... you know. So how do you guys earn money on the side?

Hello. I was diagnosed 6 years ago. I fell & hit my head & as a result I was given an MRI. It was discovered I had MS. Initially I tried and had an allergic reaction to Ocrevus & Tysabri. Therefore, I was prescribed Mavenclad about 4 years ago. I’m experiencing my first flair up and it is truly a level of discomfort I didn’t even know existed. My face, mouth, eye & chin are twitching / pulling non stop. My hearing is now very low. All symptoms are on the right side. I had a MRI on Fri. I was hoping I could get feedback on what this means. I’ve never had a flair if this what I’m experiencing. I don’t know how to end it or how to resolve it. I was prescribed 3 days of steroids, but haven’t received any relief whatsoever. I see my neuro this Wed, so I’ll be following up with him for next steps. I truly appreciate any insight given. Thank you in advance.

FINDINGS: There is stable appearance of multiple supratentorial white matter lesions, in a pattern suggestive of demyelinating plaques. There has been interval development of a new 1.3 x 1.0 x 0.8 cm hyperintense T2/FLAIR signal focus within the right middle cerebellar peduncle, with mild peripheralenhancement. There are grossly unchanged cervical cord lesions.

IMPRESSION:

1. 1.3 x 1.0 x 0.8 cm hyperintense T2/FLAIR signal focus within the right middle cerebellar peduncle with mild peripheral enhancement, consistent with active demyelination.

2. Otherwise, stable disease burden, with similar pattern and distribution of multiple supratentorial lesions. Grossly unchanged upper cervical cord lesions.

So pre-diagnosis I purchased and indoor bike as a source of excercise and like most people with good intentions mine is a glorified coat rack. I am currently in PT for some leg issues and balance. I’m wondering has anyone used a bike as a form of therapy. I do plan on asking my therapists what they think as well but I don’t know how versed in MS they are honestly. I appreciate them greatly but… just not sure

my mom (59) has had MS for nearly 30 years now. she retired about 5 years ago and rarely moves. she lays in bed most of the day every day and if she has to leave the house, will talk about how bad everything hurts and how she needs to go to bed and lay on heating pad. she does this when i'm home, too, which is fine, but it has definitely impacted our relationship, as i rarely see her or talk to her. she misses out on pretty much everything and as a result, my dad spends a lot of time alone, which also worries me.

i want to help my mom but i don't know how. MS has obviously impacted her life but it seems to be all she can fixate on. i remind her that she needs to make sure she moves and stretch every day but i'm not convinced she does. she barely eats, doesn't cook, and pretty much lives off snacking. it's as if she's given up on being alive. (she claims she is not depressed.)

i'm worried about her but don't want to be condescending or make her feel bad at all. it's a delicate situation and i'm not sure how to best move forward. i'm worried that she's just slowly withering away.

Looking for people here in Colorado, prefer SE Denver area. Our selection of neurologists are terrible. I had this disease for 29 years and the doctors have gotten worse! Also looking for a MS buddy.

Hi! I'm a 28 y/o Indian woman who recently got diagnosed with an aggressive RRMS. It's a lot to process and I've become very snippy and short tempered.

I also have a lot of unresolved past trauma and it doesn't help that I find myself being dependent on the same people who caused it.

What has your experience been like with therapy? Has it helped? Could you recommend anyone to me? (Preferably someone who has experience dealing with MS.)

Thanks!

Drinking my coffee this morning and my hand decided to just fuck off and forget how to hold my cup. Didn’t straight up spill it (thanks tervis lids) but still managed to get coffee on my brand new merch from a concert I went to recently. (It was an off-white sweatshirt.) 😭 so obviously I ran walked slowly but with a purpose straight to the washing machine and tossed it in, hoping for the best. 🥴

I don’t really need advice, just wanted to rant to people who get it. Guess I’m doomed to wear black forever ✨just in case…✨ and just when I had started to expand my wardrobe from shades of black to grey, white, and the occasional green. 😂

Edited to add: finally got the courage to go check it… looks like the stain came out! 😌😌😌😌

Hello Beautiful People ☺️

I was diagnosed 6 months ago, it is a rough journey, no one can deny that, but for me and maybe it's the case for many others, MS made me do huge changes in my life to the better, like eating healthy food, workouts, taking care of my mental health. A genuine reminder I would to share for people diagnosed with MS like me:

• MS is not a dead end, please please don't look up for symptoms and read info that only your doctor should offer. Each case is different than the other.
• Have faith, believe in God, overthinking of the future won't help, it will stress you out, and stress is the worst enemy of MS. Live the moment!
• FIGHT PEOPLE'S PERCEPTION! People and the community assume MS will end up your life, believe me it won't! Especially during this time with the medical advancements. Ignore people's pitty looks and read about the many many successful people (parents, athletes and hard working people) with MS.
• Put yourself first, make time for YOU. Prioritize your mental health. Give time for YOU, even if it's only for 10 mins. Look up to the sky, take a deep breath and you will realize how life is much more simpler than you think. Read about stress management, it will surely help. Stress' physical side effects are evil sometimes 😅

It's okay to have a breakdown from now and then, that's fine, you're a human being after all, but the secret is, don't let it control you and your life,, be smarter and stronger than MS.

Please share your thoughts in fighting this disease.

Sending love and support to all ! 🤗

Hi <3

I have MS/ IGg4RD/ Osteoarthirits -

I recently was kicked off SS because I went back to work. I WFH and make a whopping $18/hr. The Government claimed I was "not entitled". I appealed, but what a mess in the appeal process alone, which ended up with the judge not only closing my appeal, but making me pay for everything they approved within that month. Meaning Medications/Sleep Apnea supplies/Specialist Appointments/MRI's, and a bunch of other Medical Necessities to keep me alive! Long story short-Because of this happening, I missed my 6 month infusion due back in February 2024. I did end up picking up a Marketplace policy, that honestly ONLY pays a portion of PCP visits (and I have to see all specialists). I think this policy will pick up my blood draw for the Hepatitis test, and the makers of Rituxan will pay for the medication, but the hospital wants the Infusion/Nurse/Administration fees paid up front (No payment plan). I don't have this ($450), so I'm out here in the world trying to survive with what I think are side effects from not having this infusion? I have serious Skeletal Pain in my limbs and I am sure it's bone pain. Of course with having this throughout the years, and much of my treatment being oral steriods, I have developed Osteoarthritis. I think this is why I have so so much pain in my bones. I am taking Indomethicine with Extra Strength Tylenol, but this does not do anything for the pain. If anyone can share how they can relate, I would love to share <3

Hi everyone. I was just wondering is common for after dealing with major depression to want chnage your life so you can prioritize helping others? Because before my dx I was the classic romanticizing my own suffering kind of artist with all that freelance work and art studies. But after my dx it changed me a lot. During that dx depression journey I tried focus on myself a lot even tried learning programming but I started hating the visuals of sitting all day and night and let my mobility go to waste. So I just started working out and I realised that motivation was based on fear of developing disability... but it also clicked that at the moment I just really want help others , to use my journey so they could get back on track way faster than I did... I tried looking up the reasons behind it, but it all the answerw I got where from spirituality stand point and all that awakening stuff... It feels so weird...

I have few symptoms now compared to before but when I get stressed by bosses or workloads I get so sick so easily. This leads to call outs and aversions to dealing with aspects of my job. My requests for ADA accommodations are ignored and I lose the job. I don’t want to go on disability because outside of stress I’m fairly healthy. What do yall do for a living? Can I sue my old job for ignoring my requests for accommodation?

I got my first tattoo since getting sick. I have a lot of numbness and I describe it like I'm wearing a wetsuit. I've got to say, the tattoo was a breeze. I could feel it but it barely registered as pain as it went on. It was on my inner forearm so not exactly my ribs but it's a more sensitive area than some. Wondering if anyone else has had this experience. To be clear, I'm definitely not complaining. Having a tiny plus side is nice.

Inspired by another post here, I’ve decided to try micro dosing psilocybin.

I have severe muscle spasms (I take everything for it and get Botox to be functional-ish).

I’ve been doing it for just 2 days and the impact has been immediate and significant on my spasms/movement. I can move easier and I’m in much less discomfort. Also my hands function better!! 😁

I noticed it seems to last about 12 hours and it has a really good tapering period so by the time I took the next dose, I wasn’t doing too badly.

I know this is a very small window but I’m planning to test for a week.

My dose is small enough that I feel pretty normal. I wouldn’t drive with it active but I can do household tasks I normally struggle with (like loading the dishwasher or showering).

Has anyone else tried it? Any observations?

Hey everyone,

Looking to see if anyone has experienced a true relapse after being on B-cell depleters for multiple years. Not the ones you may have gotten within your first year, but anything after you were well established on treatment.

I’m going on day 4 of worsening symptoms including tingling in feet, spasticity in legs, massive fatigue, headache, things in that miasma of symptoms. I’ve experienced most of these before but the length of time they’ve lasted is making me consider real relapse over pseudo.

My neurologist says it’s very rare for folks to have actual relapses on Kesimpta, but I figure they do exist. I’ve been on Kesimpta for more than 2 years now.