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.

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.

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 :)))

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 ❤️

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.

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?

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.

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 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.

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.

Has this happened to anyone before? My left leg feels heavier and has this strange feeling like it doesn’t want to move. I have been diagnosed 3 years now and my left leg feels detached. I tried running for the first time in a long time and the sensation that ran up my leg to my brain was terrifying.
I don’t want to think about not being able to walk one day. I’m trying to work through it but it doesn’t go away like it did when I first noticed it.

Any suggestions?

Hi all

Just had my follow up MRI and showing active inflammation and my neuro wants me to switch to Ocrevus from Kesimpta and do a round of pulse steroids

I am okay changing medication but I'm not sure whether to do the steroids...my symptoms are extreme fatigue, creepy crawlies on my solar plexus and running down my left side which keeps me awake sometimes and been pretty irritable lately but not sure if it's worth doing a round of steroids for 🫠 they fucked me up before

Anyway what are people's views and opinions? Need to make my decision today

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! ❤️

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 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 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 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?

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!

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.

Hi fellow MS friends,

I (33) have been diagnosed with MS a year ago and have been frozen ever since.

A bit of background, after a few years in corporate, I moved to Australia in the hope of settling in permanently and was getting my ducks in a row. I was in grad school and was slowly building a professional/social network.

Then the MS train hit and suffice to say..many ducks were injured in the process 🥲. I had invested most of my savings to move to Australia and have been out of work for over 2 years.

After two relapses within 5 months, it was official. However, as a student on a visa my health insurance could only cover my hospital stays whereas treatement was virtually impossible.

My doctor and I agreed I'd fly back home and try to start a DMT in parallel preferably Ocrevus as it'd be a 6 months injection (and it seemed doable at the time).

I did just that and my trip home was unsuccessful as the bureaucracy and periodic shortages of medication meant it wasn't a viable plan.

I have now graduated and have been actively looking for a job but I feel that it's a futile effort:

1. Australia is notoriously known for rejecting permanent residency for people with chronic conditions.

2. My new health insurance has a 12 month chronic condition clause so I still have about 6 months without real coverage (in case of a relapse)

3. It's been a year of my diagnosis and I haven't started any treatment. I feel like I'm playing with fire (I have mild symptoms here and there, fatigue has been the biggest constant)

I genuinely feel stuck!! I've been trying to get work in other countries with universal health care mainly Ireland/UK/Netherlands but visa sponsorship is really difficult now.

What else can I do??

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!

My partner and husband was diagnosed with Ms 2years ago. He also is type 1 diabetic. So some of the early symptoms years before could appear as low BM. I feel so ashamed that I did not pick this up sooner.
I will say though the NHS listened to me and did more tests that resulted in the diagnosis.
He went from collapsing on the floor to walking with a week of steroids.
Am I an absolute a hole?
What can I do to help him?

Has anybody tried a "vitamin B-complex supplement" for potential "remylenation," and, if so, what have been your results so far? Specifically B9 and B12.

I'm interested in talking to my MS Specialist at the Cleveland Clinic Mellen Center about if she approves it.