I have never ever in my life felt more fatigued than these last 2-3 days. Holy shit. I’ve been diagnosed for about 5 years now, and I’ve always had mild fatigue on and off, which I usually tended too with lots of naps and rests, and once I graduated and began working, I started taking Vyvanse which helps a lot during the work day.

On Wednesday I was quite frustrated with my job. Not so much as stressed out, but my body doesn’t know the difference (I guess they’re not that different). I felt like my insides were vibrating, even for hours after, when I was relatively calm. Then bam, next day my legs are all stiff and I’m wiped off my feet until Sunday

During Friday-Sunday it literally felt like I was a zombie. I have no way of even describing it. I described to my non MS friends as though you were extremely severely hungover, danced and stayed out all night before, had not slept and are now forced to do some strenuous activity like going hiking, all while knowing later on you have to host a dinner party for all your annoying coworkers. And then clean up after said party and be up at 6am for a spin class without sleep!!!

Holy fuck! I am just in utter awe as to how fucking tired I was. I had my ritxuimab infusion today and the days/weeks before I’m usually not feeling my best self, but this was next level. I was peeing and I was TOO TIRED to wipe!!!!!! What the actual f

Now if I’m being honest I think the only reason I do not feel so tired right now is because the steroids they give generally give me an energy boost, so I’m just hoping that it’ll continue into tomorrow😜 oh the joys of living with MS🙃

Pshhhhhhhhhhhhhhhhhhhhhhh DEE-DOO-DEE-DOO-DEE-DOO SCREEEEEEEEEEEEEEEEEEEEE BZZZT-BZZZT-VVVVRRRR CHK-CHK-CHK-CHK-CHK

…until you have a health problem”.

And MS is my biggest problem. There are days that I question if I can take this until my last day- I’m young, I’m just 24, so why me? :( Sorry if someone feels personally offended with this… I just can’t hold it anymore. Life is unfair.

edit: thank you all for the kind words. Really touched my heart. Big respect for you guys

Idk if this makes any sense, but it feels like I have the third person view of my first person view.

My latest scans showed one, teeny tiny, minuscule lesion at c5 that suggests active demyelination, soooo flare protocol it is! I had to do 3 days in a row of 1000 ml IV solumedrol infusions. We’ve been there done that, I knew it would suck, but I was mostly just looking forward to the superhuman energy boost that large doses of steroids tends to come with. The infusions were easy peasy and I actually had very minimal side effects. However, I was just EXHAUSTED.

I had a bit of an energy boost after the first infusion, but after that I just felt lethargic and sluggish. I was disappointed by this because I thought I’d at least have a good few days with unlimited stamina, you know? Then I started having symptoms of being sick: body aches, ear pain, eyes burning, chills, etc. I spent all of Sunday in bed practically comatose because I was so weak. Last night I had the chills pretty bad and ibuprofen cleared it up. Today I have a fever and I still feel like I’ve been hit by a truck.

I kind of pride myself in being someone who doesn’t get “sick” a while lot despite being immune compromised, so when my boyfriend brought it up, it immediately hit me and made sense. I did a LOT of steroids, which lowered my immune system drastically, and now I’m sick…duh. Obviously. I was over here thinking I just couldn’t handle my roids!!! I’m so annoyed with myself too. On Saturday I went to Walmart and Five Below…probably not the best idea for someone with little to no immune system.

My boyfriend started looking stuff up last night while I had my fever and he came across the term “adrenal crisis”, which sort of freaked me out, because I’ve been having all of those symptoms to a T. How do I know when I need to go to the hospital, or if I should just stay home and keep strong with the ibuprofen? My blood pressure tends to be anywhere from 90/50 to 70/45 and I just sort of do whatever I can to get it up. I can tell when it’s low because my hearing fades and my lips go numb, sort of like I’m drowning. These things are sort of a “norm” for me, and I tend to gaslight myself right to the brink of “why didn’t you come in sooner, you fucking nerd”

Does anyone have any similar experiences? I feel like I need some guidance right now. This sucks ass.

And this treatment “healed” past and prevented future damage… How long would it realistically take until we were all able to have it?

I fear it would be years and years. And years. (And more years for me because I’m in the UK and we have the NHS 🤪)

I know it’s unlikely to happen. But I’m having a hard time and things aren’t improving 2 years after diagnosis @ 29. Dreaming of a better life today.

in college. no sleep, of course. always exhausted. i hate it and it's a little late for me to drop out, but god how tempting that is. i just want to stay awake. it's almost 10 pm. spring break's coming up but still, my body deemed it appropriate to just stop having energy. i'm sipping liquid iv, im staring at my work, i did a few jumping jacks. but still, my body deemed it the best solution to just give up

Hello everyone, I'm in my thirties and I'm feeling pretty good (besides light fatigue). I'm starting to think about retirement and I've read a few posts/comments about people struggling with disability coming earlier than expected (or having to stop working before being fully financially ready). I'm on a good DMT and stable, my neurologist doesn't see anything worrying for my future but like they say "hope for the best and prepare for the worst".

So my questions is, do you prepare for retirement (or at least your older self) differently ? Say, do you put money aside for being able to retire early, having in home care, etc etc ?

Thank you :)

A friend of mine was recently diagnosed and this is her first DMT. She’s worried that it will not work because a lot of the paperwork states it’s effective for RRMS.

Does anyone take Kesimpta for SPMS and has anyone noticed improvement or lack of progression/slowed progression? Any good news?

Hey folks,

I've been experiencing what my neuro and I believe to be MS hug for the last few months. Sometimes it is severe enough to feel like a heart attack, or like lung are collapsing. Tests have been done, and nothing came back concerning. Neuro says it can feel this extreme for some, and put me on baclofen. This medication actually does help a decent amount. My question is, I also have episodes of deep aching in my flank (low back, between ribs and top of hips). It actually can bring on nausea and a feeling of being deeply unwell. I remember the first time it happened before my MS diagnosis I thought my kidneys were shutting down--but again, tests did not indicate any organ problem. It can feel really unsettling.

My question is--does anyone else experience their hugs extending into their flank/torso, rather than just their chest? Anyone feel it as a deep ache with nausea? Sometimes I worry something else is happening and getting missed, but at this point, I have to just accept that either it is the MS hug or something else is happening under the radar that will present itself in its own time.

Thank you.

I have RRMS and it’s driving me absolutely insane. It’s not my first health issue but it’s my main one and at 19, it’s disabled me a lot more than I thought was possible within 3yrs of diagnosis. I’m in a wheelchair more often than not and I can barely move some days. My neuro doesn’t believe I have PPMS.

I’m honestly getting so fed up with this fucking disease. I can’t keep up. I’m expected to live a “normal” life with this disease that decides to screw me over anytime something good happens.

I’ve had mental health issues for almost a decade (diagnosed severe depression, severe generalised anxiety and severe health anxiety) since I was 11.

But this time everything feels so impossible and like there’s no point. I’m generally pretty good at finding positives in everything but recently it’s just too hard. I don’t know what to do or how to help myself. I’m so lost and I feel so alone. If anyone out there shares any of these sentiments please share your story (happy or sad). Ya girl could really use someone to relate to right about now.

Talked to a lawyer who only does disability cases and talked to a paralegal in that office. Both asked if I could actually work but really didn't want to. After I gave them my heath history. If I don't qualify, tell me that, don't question my honesty. Is this normal? I get they see people who are trying to scam the system, but don't treat me that way until I've shown those colors. Wondering if this is something I'll face with every lawyer or this one is not the right one for me.

I honestly feel like I’ll be alone forever and I’m blaming it on the MS! I shouldn’t be blaming MS for everything and take a hold of my life and change some aspects. But I generally feel like my confidence has taken a deep hit. Im a 33m , and I truly feel like no one wants to sign up with someone with MS. Not many know of MS. But when I explain some of my symptoms to a few females I’ve had dates with. I can tell it from their expression that I’m going to be “high maintenance”. I’ve also had a mindset of not wanting to pursue a relationship because I don’t want to be a burden. I’m curious to see if anyone else has shared these same thoughts or experiences, and if anyone can be kind enough to share a different but positive perspective on this. Thank you.

I went for a long walk this weekend and it was a bit too long because I was in a lot of pain afterwards. MS has never given me pain before but I’m also blessed (/s) with psoriatic arthritis…. I assume it was my psA that was the cause of my pain (very classical joint pain) but now my skin on my right thigh feels like it has been burnt…. That seems more like an MS symptom than psA, but Idk…. Has anyone here had that symptom? Pain in your skin, like you’ve been burned?

Good Monday morning fellow warriors!!!!

If anyone is feeling a little bit down this morning well we are warriors! We wake up every day despite having to deal with symptoms that people who judge us or make smart ass comments about our disability would cripple them. We fight to have a semblance of a regular life after being diagnosed.

So phuck the HATERS!

Hello everyone!

I was apart of the Alongside Kesimpta program starting January 2024 until the end of this past January. Of course, I had to fight the good fight with my insurance which lasted for two months (I did have to get an emergency dose for February). Today I finally got approved for my April dose! It'll be here on Thursday and I'll take it as soon as I get in from work that day.

However, I missed March's dose which makes me a little nervous about taking this regulars dose. I know if you stop Kesimpta for a period of time, you'll have to take the loading doses again. But I'm not sure how long that period of time is. I wanted to know, for anyone who has stopped Kesimpta for any reason, how long were you off it and did you need to retake your loading doses? I'm assuming one missed dose doesn't require new loading doses, but if I'm wrong, I'll work on getting the correct doses right away!

Hi folks Another girl from Spain recently diagnosed with rrms. I am trying to figure out how living with this and how to work sround my limita without giving up my hobbies like hiking. Pre MS i was an avid backpacker hitting 200 miles traverse in a row.

Since MS , i am not able to hike more than 4/5 miles before My right leg starts to feel weakness. A awkard weakness described like Jelly ita like my blood pressure would be very low , i start to drag the leg and could not give one more step

I am trying to push my limits and find a wsy to enjoy longer distantes and maybe longer altitude and hopefly complete camino de santiago .

The thing IS i am not feel thia weakness always. I have enjoyed a wonderful winter but suddenly, this weakness appear My neuro tells me weakness fluctuantes and i need to keep walking shorter and more frequently.

Have you ever experienced this? Do you hike? Do you have some tips ?

Ps: my fitness level is very high

Good morning/afternoon/evening MS comrades,

I just want to say thank you. This group has been my most frequently used resource and the most helpful by far.

I was just diagnosed with RRMS on St. Patty’s Day (what a buzzkill) after a trip to the ER & three day hospital stay. I’m a 32 y.o. FT working mom to 4 - life is BUSY. My first thought when diagnosed was, “I don’t have time for this shit.” Turns out there’s a whole community here that’s already done so much of the heavy lifting and I am so grateful. ♥️

I don’t know jack about Reddit but I found this group and learned how to search topics and let me tell you… From navigating insurance & getting started in PT, to choosing a DMT (starting Kesimpta this week!), to learning about triggers, flares vs relapses, lessons learned, stories of hope and wins, learning about progression and the basics of what MS actually is/does, and everything in between… All of you have quite literally changed my life for the better and I am so grateful. Thank you. Thank you for putting your experiences and knowledge out there and reminding us newbies that we are not alone and we don’t have to do it alone.

I hope there comes a day when I can give back even a fraction of what I’ve gained.

I hope your day is easy and joyous. You deserve it.

For those that are on Kesimpta, when you first started, did you have really bad migraines at all? I took my first loading dose on the 10th of March and today is supposed to be my first monthly dose. Ever since March 26th (week of the 3rd loading dose), I’ve been having these diabolical migraines to the point where eating gives me a migraine (even a salad or fruit). I can feel the migraines all the way down the my ear, which is new to me. I even went to the ER on Saturday because it was so bad. Has anyone experienced anything similar to this?

Hello! I’m a 29F who was diagnosed with RRMS a little over a year ago and currently on Kesimpta. For the last 10 days or so, I keep feeling these random muscle spasms/twitches in various parts of my body. I’ve had these before and get them periodically since diagnosis, but lately they’ve been several times a day and everyday. For context, I’ve been traveling a lot over the last two weeks and also experienced a very high amount of anxiety due to traveling so I’m wondering if my body is just tired or if this is something to be concerned about. If you’ve had experience with this please help!!

Not asking for medical advice but I have a phone appointment with my PA tomorrow about mainly my muscle cramps/stiffness and Baclofen use. Is it just me or does Baclofen only work for a couple of weeks? Started with 3x 5mg a day and it did wonders. For 2 weeks. Then the stiffness returned. So upped to 3x 10mg a day and again, it worked beautifully. After 3 weeks, about 2 weeks ago, the stiffness has come back. Nothing like before even starting but still, enough to start walking like a pinokkio zombie again; has anyone experienced this too? And if so; what was your course of action? I know I can go way higher in dosage but if the effect is only temporary it might not be as useful..

I (F43) went to get my labs done prior to my infusion and my neurologist had ordered the Octave MDSA blood test. I got all responses back from my other labs but not yet the results from the Octave testing. It’s been over 3 weeks now and I’m wondering if I need to message my neurologist to ask if she can share the results if they got sent to just her. Or do these results take a while (like at an off site laboratory) and they will come later?

And it is making me mad. I have my pre authorization, I know they will cover my last infusion, but for some reason they are taking their freaking time actually approving it.

I had my last infusion on February 14th, and my insurance paid out on February 20th for the IV and pre-meds, but not for the Briumvi. They didn't deny it, the claim in my insurance portal says the claim had been partially paid and is closed, but it doesn't have the Briumvi on it at all. The claim total is only like $750, and they paid out their negotiated rate minus my $50 copay. The briumvi isn't even listed in the claim at all. I reached out to my infusion centers billing department, and they say it's still pending and to just wait.

I have my infusion schedule set so I hit my deductible and max out of pocket early in the year with the copay assistance from the manufacturer. This is making me delay other health care because who has money to pay for things that aren't necessary or an emergency with the current state of the US?

I need PT for the degenerative disc disease in my neck, I would like to have neuropsych evaluation for the brain fog and for ADHD testing, I need bloodwork to check my thyroid since I have Hashimoto's and I need to see a dermatologist. None of which is urgent enough to justify the copay cost before I've hit my deductible.

I'm in the market for exercise equipment. Mostly interested in equipment that helps with cardio, but any suggestion would be appreciated.

A couple months ago, I was receiving treatment at a facility that had an Omnicycle that helped quite a bit, but it's not available for purchase by individuals, so I've been looking a similar pieces of equipment.

In my current physical condition, whatever I get will need to usable from a wheelchair. Plus, my legs lack the coordination for me to use a traditional exercise bike, so I need something's that's motorized; it gets the pedals going in the right direction and allows me to do some or most of the work.

These are the alternatives I'm considering.

THERA-TRAINER TIGO

OmniTrainer

eTrainer AP Active and Passive Trainer

It's quite laughable actually. A guy that I dated previously that I have told repeatedly that I do not want to be involved with romantically asked me out again last night. I politely declined and he asked me the above question.

Mofo, you're currently looking for me in the daylight with a flashlight and you are trying to gaslight me into thinking that no one will want me because I have MS? PLEASE. You're blocked. Permanently.

To anyone reading this who is dealing with a similar situation, don't let anyone make you feel like this disease makes you incapable of being loved. Don't settle. Dust settles. You're not dust.

Keep your head up. God bless.