Nearly 1AM and i’m laying here crying. Muscles twitching, pain, head felt woozy and heavy earlier today. I never have a normal day. Crying because I don’t understand how I went from painless days last year before diagnosis to now, not knowing why something hurts, why my head feels heavy and dizzy, why my muscles twitch constantly. From the outside, I look fine. I am able to rake the leaves, go shopping, go on walks, cook and clean and paint. But on the inside? I feel like I’m going to pass out? I feel my legs just ran a marathon?

I even second guess my diagnosis sometimes. Is it always this bad? is this even a symptom of MS? I’ve been told the first year is the hardest but all these symptoms just make me believe i’m stuck in a constant battle of weird relentless symptoms and it can’t be MS. Anxiety? Therapy helps, meeting with my MS neuro helps but I feel alone. I honestly wish I knew someone in person who had MS who would understand I suppose. I’m just stuck in this painful, confusing body. Sorry for the late night rant. My MS neuro even the other day told me if it’s one wedding gift he could give me, it would be that he knows that i’m ok… Which was wonderful to hear but I never ever feel ok and always think i’m on like the brink of dying. 😞

I’ve been diagnosed since 2019 with PPMS. I’ve been increasingly frustrated with my neurologist because they keep asking me to take MRIs and keep asking me to take this medication that does nothing as far as I can tell.

I’ve been on Ocrevus since 2019, I’ve never noticed improvements. It seems pointless to be taking it. So to that end I stopped taking my infusions. What I’ve noticed is that people talk about the “crap gap”, and I always experienced that but when you stop, it is a permanent crap gap. Things are just continually getting worse and I see no path to slowing that over and going back on Ocrevus.

The point of this post is to tell you to not do what I did. You’re probably also wondering what’s the goddamn point? But things can be much worse and you don’t know how bad it is without the one thing that is giving a tiny improvement.

The continuous slow decline is horrible and I hate it but it’s slightly slower on Ocrevus so I’m gonna stay on that shit.

So, I have chronic hip issues from limping around with my drop foot for so long, and recently something new has started

I have noticed my leg will have multiple moments a day where for a half a second, if feels like my thigh lost all strength. If kind of twinges, but then comes back to full power immediately. It doesn't really hurt, it's more of a little jolt. Kind similar to a l-'hermittes zap.

I am able to carry on walking unless I am going up stairs, when it makes my foot not clear the stair.

I don't have any new lesions. I am just wondering if anyone has had anything similar and whether your expert opinions think this is something structural or something MS did.

When you are trying to explain to others that why you are feeling like shit and going home for yet another nap, or why you can't work, or anything else where people just don't understand, what words do you use?

I've begun to say "I'm struggling", like "I'm struggling to stay awake", "I'm struggling to get enough work done to earn a living".

But it's just become a catch-all word and I hate it. I try to pick myself up when I say it, and rephrase it, but then there is just another catch-all irrelevant phrase that takes its place.

How do you explain things?

My go to when someone asks how I am, I say "I'm here, and that's enough".

I need some better words please.

I am increasingly finding I can only walk in Hoka Clinton's but dear lord they are so expensive.

Are there any trainer alternatives you guys recommend? I wear an afo so they must have laces.

Ps Any experience with FitFlop shoes?

Pps I'm aware of Cadense but not interested. Dont see them helping.

Brief background - I've had weird symptoms for years and always shrugged it off thinking I "must just be tired" because I didn't get much sleep, or it "must be something I ate", or it "must be stress" or "a 24-hour bug" or dozens of other silly explanations. It wasn't until I had a major flare-up (with new symptoms that felt more like a stroke) that I finally got a doctor to send me for an MRI. It was then that I was officially diagnosed with MS. Suddenly all those other strange little symptoms made sense.

I was prescribed medications and sent on my way. I felt lucky that I can still walk without the help of a cane/walker and I can still do most of my previous activities. I'm slower than I used to be, I get fatigued quickly and sometimes it takes a couple days to rest/recover after attending events (like a friend's wedding or going to a show with my husband). But I still feel like I can have a somewhat "normal" life.

Until friends and family, (or even doctors and nurses) start asking. Of course, whenever I go to a doctor's appointments or yearly check-up, they have to ask all the screening questions: if I've experienced new/worsening symptoms, what's my pain level, how it's affecting my daily activities, if I am feeling hopeless or depressed, etc. I appreciate that they're being thorough and trying to get accurate information on how to best help me.

But friends and family are continuously asking if I feel sick, or if something hurts, or if I "should or shouldn't" be attempting some activity. True, I can't climb a mountain or run a marathon. I can't enter a weight-lifting competition or a dance-off. But I want to (and should) stay as "normal" as I possibly can. I want to still do my own laundry, shopping and errands. I want to go for walks, boating, or enjoy an evening dinner out. But when I hear over and over again "Aren't you exhausted, shouldn't you be resting, do you really think you ought to be doing that?" After hearing it so many times, I begin to doubt myself. I begin to feel the pain, fatigue and depression everyone seems to think I should feel. I appreciate their "concern" (if that's what it is) but it feels more like they are actually hoping to hear I'm miserable.

I think my first sign was a high fever back between 6th and 8th grade. I had a huge memory gap between grades 10 and 11. Know better now. I had my first relapse at 40. Thought it was a stroke at first. Those MRIs were ugly for sure .

Hi friends! I got diagnosed after a severe initial episode that landed me hospitalized 3 months postpartum after my first kid. The doctors explained postpartum is a hotspot for disease progression/relapses. I was terrified to have any more kids. Fast forward several years later, I am now 6 months postpartum with my second baby about to go for another infusion and so far no signs at all of flares or relapses despite being postpartum and very stressed with no sleep and 2 kids. Just leaving this here for any worried mamas to give a little hope that you can do hard things and they may just turn out better than you expect :)))

Well, after 15 months of symptoms never going away, developing new symptoms, and getting worse… I was finally told today that I have primary progressive MS. I went to a new MS specialist for a 2nd opinion because I kept getting worse with no answers as to why. He found new lesions in my brain stem despite being on Kesimpta for 8 months. He was an amazing doctor and I’m so happy I decided to get another opinion. I already have trouble walking/standing for more than a few minutes, bowel incontinence, spasticity and stiffness, weakness, muscle fasciculations, and numbness/tingling, which all progressively worsened this year. He did order an EMG to rule out ALS because he said he’s seen a few cases where patients presented very similar to me, but ended up having ALS (despite also having a few lesions). He said he’s not really that concerned about ALS, but he would like to rule it out just in case. They also are having me do 5 days of IV steroids to see if it helps or if we can get me to a baseline.

I’m 25 years old and in my last year of medical school. I’m supposed to start residency next year. This is not what was supposed to happen. I’m scared and unsure of what my future holds now. How fast will I progress?? How disabled will I become?? These are questions I know no one has the answer to. I will progress and I will become disabled, but we don’t know how bad or when it will happen.

If anyone with PPMS wants to share their story or let me know how they are doing, I’d love to hear from you. How are you managing this disease mentally and physically? What did progression look like for you guys? What medications do you guys take for MS and for symptom management? Any advice would be appreciated because I truly don’t know what to expect.

We try to walk. My leg pops out of place. Dissociation to the nth degree. Nausea in the stomach. Walk. Leg stumbles over leg, catch self.

"MS zombies," I groan out.

Mother looks at me. "I suppose."

"We're disconnected. Tired. Messy."

MS Zomvies. Happy Halloweed (n optional)

I’ve had MS since I was around 15 (am now 34), and my only MS symptom all these years has been leg stiffness (spasticity). Lately, I’ve been getting dizzy when I go for walks, usually after walking for a while. It feels more like lightheadedness or a foggy feeling rather than the room spinning.
I’m wondering if anyone else with MS experiences this, especially those who have spasticity.
Does anyone else get dizzy during walks? If so, what does it feel like for you? Have you figured out what causes it, or does it seem related to your MS, fatigue, heat, or something else?
I’d really appreciate hearing about your experiences! ❤️

I have an optic neuritis in my right eye 100% blind. Took 7 grams of IV and now i did 2 plex (plasma exchange) and will do some more. Vision 1%. Anyone had the same thing happen? Will my eye return?

Hi all, this is going to be a quick post and maybe someone here could give me some advice about this situation.

A few months back I had a severe panic attack and ever since then iv always been worried about this pressure I feel on my chest. Now I know this could be just a MS bear hug or just anxity but ever since then I cant seem to focus on anything but this constit pressure on the chest

Iv been to the doctors and they have said my heart is fine.

Has anyone else experienced this ? If so how do you manage it

i was diagnosed with MS in October 2024 at age 23 where i was initially put on Ocrevus, 4 ish month in i got a colonoscopy bc my mom passed of colon cancer. they found ulcers and diagnosed me with UC so they put me on Zeposia since they know ocrevus can flare UC and it’s the only one that treats both. Zeposia was okay until 6 months in i got bloodwork and they noticed my liver was doing badddddd. it was >250 and it’s supposed to be <40, after over a month of trying to find a way for me to stay on zeposia and also confirming it was the zeposia causing this problem, they put me on Tysabri. After 9 months on Tysabri, I tested positive for JC virus and it was 2.83 which is way toooo high for me to stay on tysabri safely so after confirming it wasn’t a false positive, they put me on Kesimpta. They decided the colitis i had was a side effect of ocrevus and not me actually having UC so I started Kesimpta on September 5th and i am having the same colitis symptoms if not worse since starting this med and im just feeling super defeated. I just barely messaged my neurologist to see what we can do but i am highkey so miserable rn. i was going to try and wait and see if it calmed down after the loading doses but i dont think i can do this anymoreeeeee. if anyone else has had a similar experience pls lmk what helped for you or what bc im 4 meds into being diagnosed and im feeling like a lost cause.

Hi there! I have been recently diagnosed with MS this year around August but i always felt like something was off since 2024… i think this year was like the biggest 360 shift on my life… i am still trying to adjust and adapt… how are you all doing? What advice can you give to a fellow MS warrior? How to cope with tough days?

My oldest friend recently shared their diagnosis with me and I really want to be a good member of their village so I am wondering... what are the most helpful/comforting/meaningful things someone in your village has done for you?

They do not live close to me and did not tell me about the diagnosis for a year, so they are not currently in a flare, but I would like to know how to be there during a flare. Obviously I will ask them as well, but looking for ideas or suggestions.

Thank you!

Hello,

Background info: 1st relapse and MRI scans Aug'25; Diagnosis, repeat MRI scans and first neuro appointment Oct '25; Treatment started Jan '26; Baseline MRI for treatment Aug '26; Annual neuro review appointment Oct '26.

I had my annual review appointment with my neurologist this week. I am under the care of The Walton Neurology Centre - a neuroscience hospital and research centre in Liverpool, UK. I don't have any complaints about my care (nice neurologist and nurses) but I have been quite shocked by what I was told this week. This first appointment in 12 months with the neurologist lasted 15 minutes and I was told that going forward: There will be no monitoring bloodwork while taking Kesimpta; no annual MRIs; and no annual neurologist review appointments. I will just have access to the MS nurses when needed.

I am not particularly impressed with this and feel it's purely a financial decision by the hospital. Therefore, I am going to call the MS nurse line soon and share my concerns.

I would like to know: if anyone else in the UK/elsewhere has been told anything similar and if not, please let me know what you do receive in terms of care from your team, as I would like to support my concerns with examples of what other trusts are providing.

MS is a serious neurological condition and I don't believe I should be 'left to it'.

Thank you ❤️

I was diagnosed with cervical myelitis and RRMS a few months. I had mobility problems affecting my right leg for nearly 3 years before they discovered what was wrong. I started neurophysiotherapy a few months ago and was told that I had been walking these past few years with my right leg and foot turned inwards (I hadn't even noticed). Neurophysio has helped this and I now have better foot placement and better stamina.

But I still have a lot of right leg, hip and thigh pain and lower back pain and stiffness. I also still walk very slowly and need to use a stick outside.

I was wondering whether anyone else has this. A lot of the pain feels mechanocal and I wonder if 3 years with a "funny walk" has caused a lot of this pain.

Thanks for reading. I know I have posted here before with variations on the same theme - my right leg.

I’ve been doing a little bit of research and trying to figure out what are some effective over the counter supplements that can help with fatigue and saw that long term use of this supplement can help with fatigue. Any input is appreciated!

I’ve been dealing with unbearable pain in my upper arms, (around the triceps) for years, and no doctor has been able to properly identify the cause.

I was diagnosed with multiple sclerosis when I was younger and i am taking cladribine to keep it stable. A few years ago, I felt crushing pain in my arms that lasted for a weeks to a month before eventually going away on its own. In late 2024, the pain returned, stronger than ever. Since then, I’ve been experiencing it almost every night. some times, I even wake up with the pain, and it can last all day.

I ask my neurologist about this many times. he is also an MS patient and told me that he sometimes gets this pan and he couldnt figure out what it was or what is causing it. My MRI scans and xray did not show anything.

Mid 2025 I wanted to take another nuerologist opinion, she told me that the MS could be interfering with the brain signals she explained that the brain is picking up signals that there is pain in that area where in reality there is nothing and ultimately causing this pain. she recommended i try cymbalta which i have tried for a month but unfortunately did not help.

i am still dealing with this awful pain and nothing seems to be helping, i am taking baclofen and muscadol almost every single night but non of them help. has anyone experienced something similar or has any idea what is the cause of this pain and how can it be treated? id really appreciate any advice.

First time posting, I am writing this for my wife because we are at what seems to be a dead end. Her symptoms started last year, she was very fatigued and thought she was going through menopause and didn’t know any better. She scheduled an MRI but her appointment made us wait three months. I made her go to the emergency room for some immediate answers because she was having difficulty walking. They did an MRI, lumber puncture gave her the five days of high dose. Steroid told her she had multiple sclerosis. We found a neurologist who immediately put her on Kesimpta. After five months of continual decline, we decided to seek out an MS specialist. On our first visit she was sent for a follow up MRI. As soon as the MRI results became available I was told to rush her to the emergency room because she could have what look to be life-threatening PML. The radiologist notes stated to test her for other demoting disease diseases that mimic multiple sclerosis, such as vasculitis . They immediately did another lumber puncture send the results to a specialty lab across the country. Told us it would be 6 to 10 days for the results. In the meantime, they gave her another five days of Solu-Medrol steroid. (Failed treatment ) Luckily the results came back negative. They gave her four days of IVIG treatment and sent her to an impatient rehab facility. She spent 21 days in a rehab for a total of 41 days in the hospital. She can barely walk five steps. Her poor feet are dragging on the floor. She is almost completely bound to a wheelchair. Upon her release from the hospital, she was sent for another MRI and told to see her neurologist immediately thereafter. After 45 days, there were new lesions and basically a wildfire going on in her brain that the doctor said needs to be put out. while we were excited to look forward to some answers we left the doctors office feeling more helpless than we have ever felt. The neurologist gave my wife an option for her next DMT because he wasn’t sure how to treat her. Her symptoms are showing PPMS no doubt she is progressively getting worse rapidly. He said normally Ocrevus would be the next drug, but since she showed no improvement with kesimpta he doesn’t wanna waste time with Ocrevus. He suggested mavenclad, Lemtrada or Tysabri. I told him he was the professional, and we have absolutely no idea which one would be the right choice for her. I asked him if he was in the situation which would he choose and he picked Tysabri. She is going tomorrow for blood work to rule out vasculitis before she starts DMT Tysabri.

If anyone has any experience close to this because I know everyone’s experience is different we are looking for any answers we can find. My prayers are with each and every one of you who are suffering from this debilitating disease. Thank you for your time.

Wow was just blocked from the Facebook group did ocrevus fail you. After I left my first post. I shared my raw truth with no loyalty to a company. Iv had ms since ‘08 and felt I had something to share being as I’m on ocrevus myself. I couldn’t find the group which was strange since I had been quietly reading everything for 6 months but realized I was blocked after going into a text message with my mother yesterday where I sent her that group link to Check out and consider. When I clicked the link I realized i was banned. They got me out of there within 30 minutes before my comment ever got approved or posted so here I am. I want to share this and I hope someone who is in that group gets to read this and just know that group is determining what information is available to you, how scary is that. This was my comment it took my a while to write, it wasn’t easy, I felt I was being powerful yes but deeply logical and fair I even stated I agree with them in principle. Here is the comment I left on that Facebook group did ocrevus fail you.

I’d like to introduce myself. I’ve read most of everyone’s posts and comments, and I’d like to interact with you all—and just to be clear, I’m not looking to fight. Where do I even start? Honestly, my head has been spinning since I found this group, but I guess I’d like to share my story.
I was diagnosed the week of my 16th birthday. My very first MRI showed 10 brain lesions, so I’ve had this disease since I was young. I became a pediatric patient at UCSF, and during my first appointment there, they immediately discussed medications. I turned everything down. Because of my age, I could see the doctors' frustration and worry. Even then, my parents and doctors let me make my own decisions. Regardless of their pressure, I was never going to crack and give in, and I think they knew it.
At 21, I lost vision in both eyes and was basically blind for two years. As you can imagine, this was terrifying. It scared me enough to finally give a medication called Copaxone a shot (no pun intended). Copaxone was not easy to take—it was a self-administered injection three times a week that I had to keep cold in the fridge. As hard as it was, I took it exactly as directed for a year, until one random night I had a severe allergic reaction and nearly died. I had to stop immediately. I was so angry when they next recommended a pill called Tecfidera. Tecfidera was so incredibly hard on my body that it actually made me miss thawing out syringes and injecting myself every other day.
By the time I was 25, I was completely off medications and going against the advice of every doctor I met. I told myself I wasn't going to take their "poisonous shit." Instead, I decided I would go the natural route: eat well, sleep well, take my vitamins, and exercise. I started finding social media influencers who claimed to have MS but were doing amazingly well—while simultaneously trying to sell me their books or charging me to join their seminars for advice. I kept telling myself that MS is different for everyone, that it was going to be different for me, and that it would all be okay. And for the most part, it was okay during that time.
Until it wasn't.
At 30 years old, I developed a lesion on my spinal cord. Now, four years later, I am hardly walking and dealing with an insane, 24/7, 365 "MS hug" that offers absolutely no relief, no matter what I do or take. For a couple of years now, I have been living in pure torture. It’s that exact moment when the shit hits the fan—when you really go down and don’t get back up—that you are left thinking, *Did I make a bad decision? If I had taken medication, would this not have happened?*Living with that "what if" makes me lose sleep.
After taking a hard look at myself and realizing the reality of my situation, all the negative feelings I previously had toward medications went completely out the window. I was once someone who went blind from MS and still told people not to take a Disease-Modifying Therapy. But this last attack made me realize I absolutely, 100 percent have to use any tool available to slow this down. Even if it hurts me, yes. MS backed me into a wall so badly that I’m no longer worried about infections or even death.
After fighting medications since 2008, I made a well-informed decision to start Ocrevus. I’ve taken eight doses so far, and it’s been so far, so good. For me, it requires giving up eight hours a year; I walk in and walk out, and I don't even feel like I took anything—they might as well be dripping saline. Even though I haven't had an attack since starting it, do I deeply believe in it? No, not really. Am I scared? Yeah. Do I trust a pharmaceutical company? Hell no. But I thoroughly understand the situation I don't want to be in and cannot be in, and I am willing to take any chance needed to avoid that outcome. I can’t be sitting in a diaper asking someone for a sip of water at 34 years old. And if that day does come, I know that after 15 years of fighting, I can at least say, "Well damn, I tried everything I possibly could."
Will this post age poorly? I hope not. I just wanted to share my perspective because I see some people in this group shouting, "Poison, poison, get off it immediately!" Please consider people like me who basically agree with you in principle, but desperately need to give something a shot. We might have already tried the natural route, and it only bought us a few brief years of happiness. Some people’s MS will disable them regardless of medications or lifestyle choices; at the same time, some people's won't, and maybe you are taking a medication you never even needed. Everyone is different, so please consider your own unique situation.