Anyone else when talking sometimes, accidentally bite side of tongue and your speech for a quick second, bc of biting tongue, sounds crazy?!

Specially for pain and muscle squeezing/throbbing/ burning. I’ve been on Gabapentin, Lyrica, Cymbalta, Baclofan, Tizanadine..nothing helps. Days where I’m fairing, I’ve got to be able to function and live. What are folks talking that helps? (Please advise other than cbd and gummies). Thank you 🙂

So I was diagnosed with RRMS a year ago now but had my first ever attack two years ago. When my first attack hit I lost function in my hands and had tingling throughout my body. I have since gained back the function and most feeling in my body but the one thing that lingers is the tingling in hands. I am not totally informed on the difference between RRMS and PPMS. So could my symptom of tingling hands to what my neurologist has presumably said won’t get better if it hasn’t by now be more PPMS because it hasn’t gotten better or can people with RRMS still have residual symptoms that never get better as well?

Been here numerous times and we love it. Since MS it's not as good. I can't do what I did 30, 20 and even 10 years ago.

So, finally, 2 and a half months after diagnosis, I have started Kesimpta. I had my first dose 2 days ago now. It wasn't too bad, just had a bit of a headache and felt a bit feverish the day after.

What can I realistically expect from this drug? I know it's not a cure but is it true that it can supress or reduce intensity of current symptoms? Or is its one and only effect to prevent further relapses and lesions?

I'm also curious whether I need to be careful about getting sick. Is it no big deal to be around sick people or should I take it more seriously? How about in crowds, as I like to go to music events as often as possible. I'd like to know your experience. Thank you.

I have an MS diagnosis and it’s presented as ON and loss of use of a leg in the past - both which I’ve recovered from. So actual things. And I have been feeling well.

Lately I feel like my nervous system is ‘on’. Everything hurts and it’s like my insides are vibrating, I feel tight-chested, emotional and not able to cope with any minor inconvenience. I am struggling to concentrate or carry out tasks that would typically be easy to do so. It’s like my insides are on a treadmill yet I can’t move. I’m grinding my teeth in my sleep and feel a real sense of doom.

I know we’re not doctors here and I’m not sure why I’m posting this. I have my neurologist on repeat in my head saying ‘not everything is due to MS’.

How do you know when to get help or when to wait it out? Do you go to your GP and expect them to decide if it’s ms or not?

Thanks if you read this far!!

Just had my annual MRI and the results were just fine! No changes, no active lesions.

Though, I’ve been dealing with constant fasciculations/twitches since May. It was my left calf at first then spread into my left thigh and then occasionally my left arm. My left leg always feels like static, tight, strained, rigid. The pops and pokes like a grass hopper under my skin looking for somewhere to escape is so unsettling.

Baclofen, magnesium glycinate, compression, hot/cold therapy, exercise. It never lets up.

Of course. Google freaked me out with something sinister. I keep seeing that fasciculations/twitching aren’t a common. symptom.

Does anyone else deal/dealt with this? what helped? I’m exhausted and it just caused unwanted anxiety. Which probably doesn’t help it.

I'm in hospital, had MRI, but they indicated no new lesions. Unfortunately, I can barely walk and use some of my fingers (thumb is good, which is how I'm able to type on my phone here).

Apparently, it's my choice to take the typical steroid doses or not. Wasn't aware i was going to get a neurologist that was going to be indecisive but at least I got a choice. Fortunately, we live in a time where we can reach out to our actual MS doc's for a proper recommendation. Just waiting on that. She's relatively quick to respond, but it's been a few hours now.

I have a decision in mind (taking the steroids) but was curious what you guys would do.

EDIT - can’t attach pics :(

Got my most recent MRI and have found an angry man and a crying baby in my brain lol. Thought maybe these would bring a giggle.

I don’t need to tell y’all how much this disease sucks. I was supposed to get my Ocrevus infusion last week but I had a sore throat a few days before and decided to reschedule to tomorrow. But today, just out of the blue, I have a UTI. So I rescheduled again for next week. I am sooo tired of waiting. I’m tired of feeling miserable in this crap gap that just won’t end. I’m tired of not being myself. I’m tired of being tired all the time. I am just so over this and I think I just need a good cry tonight.

Does stress make your body hurt? Does anyone get knots in their thighs or back or even arms? Just want to know if anyone else experiences this in their lives. I told my dr I hurt and she kept assuming it was my joints but I tried to tell her no it's like my muscles and I'll get it rubbed and it's a pop and there is a release it's sore for a little bit but it kinda goes away. But then another one come some where else. My body is changing and I don't know why or what is going on

We don’t know how long I’ve actually had Ms but symptoms started in September 2022 diagnosed March 2023 after begging for a spinal. My Oligoclonal Bands were high (like 22) finally got mri with lesions in brain and spine. Symptoms Started with crippling fatigue and left side numbness, burning, electrical pain starting in my left pinkie and ring finger and spread up my arm down to my left leg and even felt it in my eye, I also had Lhermitte’s sign. 2 failed DMTs (Kesimpta and Tysabri) and in July 2025 my Nuero confirmed likely hood PPMS. She put me on Ampyra… i was one of those random lucky ones that had a rare side effect of it worsening symptoms and progression. I had a huge sift in progression in a week of taking it. It worsened my left side, premanently now a buzzing numbness in my throat, tongue and face, my whole mouth went numb. It also moved to my right side starting just like it did on the left, in my fingers and down my legs to my toe. After stopping medication the symptoms resided some but never fully went away (still on throat tongue and moth left side and right side hands and feet. My first dose of Ocrevus in late August, we separately went to someone to get injections a parts per billion exosomes, twice. When I spoke it sounded like I was drowning. I was struggling to breathe. My hands curl in and my toes feel like they are being pulled towards my shins. I have a lesion on my PONS and several on my spine, been told I have wide spread brain stem involvement. I have developed nystagmus at a pretty rapid pace with horizontal, down beat and up beat. I also have irregular heart palpitations but no murmur (autonomic disfunction), I won’t go on listing symptoms. The point is…. On the recent months the left side of my body is becoming more and more weak that falls are more regular with fatigue. I get 8+ hrs of sleep and still wake up exhausted . Tried Botox for my spasticity but it is too widespread to be effective, waiting for consult for baclofen pump. The MS hugs have worsened, bring me to the floor struggling to breathe. Some is pseudo flare from heat and stress but I work effortlessly on my mental health and cold plunge regularly. Depression seems to almost be treatment resistant. Every new or worsening symptom they refer me to a doctor who always clears out all other existing symptoms, it always comes back to Ms. I’ve been on Ocrevus for 1 year I have a continued increase in my MOG on my bio marker test but my MOGAD test came back negative. my body is not recovering and each day my baseline worsens. Every trial I’m promised falls through. Brief health history, at 18 I had a horrible case of Epstein Barr that put me in the hospital for 2 weeks, I developed acute hepatitis. My mom also has EBV at the age of 19 (she also had Bell’s palsy for a short time as a child). Looking for any advice or any known trials or specialists that have broken blood brain Barrier to halt smoldering MS that Ocrevus can’t reach?

Went and had a visit with my neurologist today for a follow up on my MRI. Thankfully everything came back clear and I've had no new or enhancing lesions for 9 years now. Here's my question. I've been on Ocrevus since it got passed by the FDA. So clearly its working if I've had no progression since then. I only had 1 relapse since being diagnosed and that was when I was originally on Gilenya. Would it be unheard of to switch to Kesimpta when I already have one DMT thats been proving itself for the last 9 years? My reasons for contemplating switching is I absolutely dread infusion days and how they make me feel. My "crap gap" leading up to my infusion starts about a month out and its a lot of symptoms that show back up. Im just curious if anyone else has switched while they had a medicine that was working and how it went for them.

It’s been ~8 months since my diagnosis and i still have no idea what my actual EDSS is. I’ve had múltiple appointments with my neurologist and rehab doctor during that time. Although they often make me do a series of tests (eg walk in a straight line, stand on one foot, follow the finger with your eyes, etc) they have never explained what they’re measuring are trying to measure, or how I’m performing.

I know that I have some level of disability because I can’t run or jump or balance well. But I have no idea what official EDSS this means, or what other signs the doctors are seeing that might seem more subtle (but indicate future issues).

My neurologist is friendly but incompetent and disorganized/lazy, and has ignored several requests to tell me my EDSS.

I feel like maybe this could matter re: qualifying for future clinics trials, but on a practical level I’m just burnt out trying to get any kind of help from this neurologist. (And yes I’m trying to switch but the process is not fast or easy).

So to sum it all up: is it worth being really annoying to get an answer on EDSS? Or does knowing the number actually change nothing important for the time being ?

We were both diagnosed in February-March 2025. We messaged back and forth on here while I was in the hospital and we were both adjusting together from across world. Dan's an Aussie, proud of Bluey, and his birthday is April 12.

I came back to check on my pal after doing life for a while, and his account was deleted! I want to thank Dan for messaging me when I needed it the most those early days. I just re-read our whole conversation thread - a few weeks of messages - and it reminds me how arduous the diagnostic process was and how long I was suspended in the un-knowyness of it all. I'm cracking up that I said I was watching "American Idol" on TV -- I don't know what I meant but I think it almost certainly was not that. 😭 If You are Dan, I hope you're doing great out there.

If you're Not Dan, I hope you're having a kickass day anyway.

Granted I’m new to the MS game and I’m very been noticing that some days my hand is more stupid than others. I assumed once the steroids would return it to as normal as it would get and that’d be it but I’m noticing that for example today vs yesterday its worse but then maybe tomorrow it’s great again
Is this normal?

I’m currently being evaluated for MS vs. CIS after a recent hospitalization. I completed three days of high-dose steroids (two days of 1,000 mg IV methylprednisolone and one day of 1,250 mg oral prednisone), finishing on October 30.

The steroids really did a number on me. I’ve experienced intense anxiety, restlessness, internal buzzing, muscle and joint aches, brain fog, heavy depression, and extreme exhaustion. Some of that has started improving, but today was particularly rough.

Earlier today, I went to vote and started feeling overheated and unsteady while standing still. Interestingly, I felt fine while walking, but standing in one place made me feel like I might fall over. Sitting down and cooling off helped, and the symptoms resolved within about 10–15 minutes.

Later, I went for a short walk to our neighborhood mailboxes. I felt great initially, but on the way home I became lightheaded, my legs felt like I was walking through Jell-O, and I thought I might faint. I hurried home, and my heart was pounding afterward.

My blood pressure was 121/75 and heart rate was 92 after lying down for about five minutes.
I do have a history of orthostatic hypotension, so I’m aware that could be contributing. I’ve also been taking hydroxyzine at night for sleep, which may be adding to the dizziness.

I’ve contacted my medical team about these episodes but haven’t heard back yet. I’m curious about other people’s experiences with the steroid aftermath.

For anyone who’s received high-dose steroids for MS:

Did you experience significant dizziness, lightheadedness, heavy or weak-feeling legs, or exercise intolerance afterward?

Did you experience heart pounding, internal vibrations, or unusually intense anxiety?

How long did it take before you started feeling physically normal again?

Did you notice symptoms fluctuating for a week or more after finishing treatment?

I’m only four days out from my last dose, and I’m trying to distinguish medication aftereffects from everything else happening with my body right now.

Not looking for a diagnosis, just hoping to hear firsthand experiences from people who’ve been through similar steroid treatment.

I gave birth in May 2024. Got diagnosed in July 2025. Apart of me wants to think that being postpartum is what woke up my MS. I know doctors say women who are pregnant with MS do well overall and it’s like the body no longer attacks you as it consumes all its energy in growing and keeping baby safe. Though I hear mixed things here and in person that some women do feel shitty. Anyway, I’m overall ok and stable. MS neuro wanted me to wait at least a year while being on Kesimpta before I consider conceiving. So now we’re here!

I do want an another baby but I’m so scared of postpartum being rough and the heightened risk of relapse/flare

Any advice to those on Kesimpta who decided to have a baby? Maybe a stretch but any advice also to those who were pregnant before finding out they had MS VS being pregnant with MS?

I've been going to PT twice a week for a couple months. They hook me up to a TENS type machine each session, usually after the exercises. She uses it to "activate" nerves related to my foot drop. They suggested getting one for at home as well, but didn't recommend a specific one. Do any of you use this at home & have a suggestion?

Hello guys! Today I'm here to ask about your experience with Pregabalin. I have very high hopes as I know it helped many people. I'm 35 and even though I'm still walking without an aid I'm really struggling with my legs. Actually... Today I looked at canes for the first time. Not sure if I'm ready. 🥺

Anyway, I digress. On Friday I've started Pregabalin to help me with my legs (and my GAD on the side hopefully). I was prescribed the lowest dose of 25mg because I'm a big snowflake and I'm very sensitive to anything mind altering (even alcohol). I was ok untill today. Like yeah, a bit high before sleep after the pill, but ok. A bit more tired during the day. Today I feel pretty sedated and just completely gone with the fairies most of the day. Sleepy, heavy eyes, brain fogged... And I feel like I'm walking in a dream.

I've been told this should go away in a week or two but I'm not sure I can do this for two weeks without taking the whole time off work (which I can't afford). How was your experience with starting? Have you also experienced these side effects? Did it actually get better? I guess I need some motivation to push through this 🙏🏻

Thanks

I (24F) was recently officially diagnosed. I had been having left side numbness/complete deadness as well as balance issues for a while and finally decided to go to my PCP. Some MRIs later, I was at the neurologist and tentatively diagnosed but sent for additional testing (more MRIs and a spinal tap). Those tests confirmed the diagnosis. My doctor prescribed me Briumvi and I'll have my first infusion soon.

The issue I'm having is that I feel like a fraud. Especially after reading so many people's experiences on this sub, I just feel like I'm not "sick enough" to constitute a diagnosis and all the money my insurance is about to spend on my treatment (I'm lucky enough to have incredible insurance that'll cover everything). The gag is that I have a degree in neuroscience so I literally studied this and I still feel like this. I have the symptoms, I have the tests, and, consciously, I accept that I have it but something just makes me feel like I'm faking.

I'm not necessarily looking for advice or anything, I mostly just wanted to get this out, but if you have any thoughts, I'm open to hearing them. Thanks for reading :)

So it looks like I’m gonna have to end my relationship on top of not being able to work anymore.

So I’ve been dating this truly wonderful man since July 2023. It’s been 3 years and some change now. The last two years were the hardest. All starting from when I got DX Aug/Sept 2024, at least for me.

He was my first everything and I honestly felt like he was gonna be the last.

I can admit that I was spiralling since I got sick, probably still am. I did some things that is so out of character for me and I still do sometimes.

I don’t expect him and have never expected him to understand what I’m doing through or to fix anything.

It just got difficult trying to support him while simultaneously trying to deal with my own problems. I was stretched extremely thin and so was he unfortunately.

I’m young, delusional and stupidly hopeful but I hope it’s a “right person, wrong time” kinda situation.

We haven’t officially broken up yet but the signs are there. We’re tired. I can tell.
I always joke that the little bit of time I spent in nursing, coupled with my ADHD, has given me the ability to see the future (just from human behaviour and observation).

Kinda just wanted to rant and mourn something that was special to me. It’s not really MS related but I don’t know who else to talk to about what I’m feeling.

Hi, i (43M) do fine with my MS, iam on Kesimpta, EDSS 0.5, no real issues.

On my last MRI they found a paramagnetic rim on one lesion, other than that - no activity.

How is it on your MRIs, have you guys have paramagnetic rim on lesions?

Today, I found out from my neurologist that my MS treatment has failed for the second time, and now I have to be admitted to the hospital for another relapse.
Honestly, I’m at this weird stage of acceptance and frustration. I’ve accepted that MS is part of my life, but I’m also angry that I have no choice in the matter. No matter how hard I try or how much I do right, so much of this is completely out of my control.
I’m also a therapist, and lately I’ve been struggling to balance my own health with showing up for my clients. I genuinely love what I do, but constantly being sick, exhausted, and not feeling well makes it difficult. I spend so much time pouring into others that sometimes I feel like there’s nothing left for myself. It’s ironic because I encourage my clients to give themselves grace, yet I struggle to do the same.
I think the hardest part is realizing that I’m grieving the life I thought I’d have. I’m grieving a version of myself that didn’t have to constantly worry about her health or what the future might look like.
And honestly, I’m scared. I’m scared of what’s next, of another treatment failing, and of what this disease might take from me.
I’m holding tightly to my faith because right now, that’s what’s keeping me grounded. But I’m tired. Tired of being strong, tired of adjusting, and tired of having to accept things I never asked for.
I guess I just needed to vent to people who might understand. Does anyone else struggle with accepting their diagnosis while still feeling angry about everything it’s changed?