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 ❤️

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.

Does anyone else wake up extremely stiff and painful? I would describe it as feeling like a 90 year old after a car crash is how my body feels.

Specifically the muscles down my spine, neck and traps. After a stretch and movement it usually resolves. I’m wondering if this is just a normal MS thing or I should be looking into other things.

Would love and appreciate your advice.

My best friend of 25 years (F39) was very recently diagnosed with MS. She has a supportive husband and two young daughters (8 and 11). Is there ANYTHING I can do for her outside of emotional support and offering to care for her daughters? We’re so close we both consider her kids my nieces. We are family. I try my best to offer to look after the girls when I can and help out. But can I do more? Can you offer any other tips that would help me help her?

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.

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 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’m starting to accept that a mobility aid (a cane) may be in my near future. I’m looking for one that is either extremely inconspicuous or really bitching. I am a 29F with a two year old and another on the way so I would like for it to either blend in as much as possible OR be so cool that my toddler doesn’t know it’s abnormal for mama to have a cane at such a young age. Please help!!

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

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?

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??

Today I had the worst day in a long time.

Just for context: I have a law degree. I went through law school, 3 years internship and a lot of bar exams (in my country we have to do several exams as the internship progresses, one each year).

Just when I got my license, I got diagnosed and ended up In the hospital. Since then, life has really gone down the drain.

It's been a long 10 years since I got diagnosed, and although I don't have many physical complaints, my brain, which I always thought was my best asset, has basically turned to mush.

Today I had an oral exam, on a job interview for the legal team on the local city hall, and I humiliated myself. There is no other way to put it. I studied, a lot, and still my mind froze on every question. The words wouldn't come out and I felt like my brain was working in slow motion.

I hate this disease, it has killed every dream I ever had, along with my self confidence and self worth...

I hate that this is my experience. I've been diagnosed with MS for almost four years and I know that my first few years with MS were pretty extraordinary.

Within 9 months of starting immunotherapy (Rituximab) my body started shutting down. Of course my female neurologist did not take me seriously and at the second trip to the ER they found a lump in my mediastinum, below my right breast. I was losing the ability to walk and I was terrified because breathing became difficult. Turns out I had a cystic lymphangioma of the thymus gland and required a full thymectomy. It was done with a robot and was minimally invasive. It took me about a year to start feeling normal again and mentally I'm still messed up because of how rare the issue was and how little support I received after.

At the time of my diagnosis I had just finished grad school (I went back in my 30s) and was working my dream job. My mother had died of Lewy Body Dementia a few years earlier at 72, and the family I have left I realized would have accelerated my disease and I stopped contact after my surgery. They didn't check in after.

I'd been with my partner for 5 years at the time of my diagnosis and I knew who he was and who he still is. He had been by my side during my mom's brutal death, COVID, and my older sister losing her baby in the NICU after 20 days. I was there with her. She sent me donuts when I was diagnosed.

I spent those 5 years getting to know his family and spending holidays, weekends and fun events together. A month after my surgery was the first time my partner left for a month. I couldn't really walk and we lived in a split level house. Over the next year he left two more times for a month. I reached out to his family and they said they couldn't get involved. I haven't spoken with them for years.

I know he is very emotionally immature but that doesn't excuse the avoidance abuse that I've been experiencing for years. I need to leave this relationship but he's been taking care of me because I haven't been working for two years.

I've been denied for disability twice and was not in the mental or physical place to get a lawyer but I know I need to push past that to get out of here.

I've spent years going to therapy, support groups and the like, but I haven't been honest about how f'd up my situation is because my life has already been hard enough.

I'm writing this asking for advice, whatever other people with MS have heard, done, seen when people are stuck in this situation. Im not sure what I'm going to do but I know keeping it in my head is overwhelming. My new neurologist is aware of what's going on and agrees I can't manage my symptoms like this but offered no help - not sure if she's supposed to.

I'm currently taking meds for MS and have had no new lesions or lesion activity since the surgery.

Also we have no kids, just a dog that is the love of my life.

I know I can handle this, I just feel dead on the inside.

Checking to see how often those who have Gastro issues have flares and what are they symptoms. My symptoms are lower abdominal cramping (sometimes all over abdominal), recently excessive gas, rectal spasms ( not unbearable), loss of appetite that comes and goes, bowel movements that goes from firm or constipation to loose and soft, excessive throat clearing and sometimes nausea. I experience it a lot and at times i use the bathroom two or three times a day when I’m normally constipated.

Today, I had my first… incident… let’s say, of dropping something since my diagnosis that wasn’t just an obvious ‘clumsiness’.
I was about to make lunch and grabbed a plate from the dish rack at the sink, then turned and reached out to the right to sit the plate on the worktop, and before it reached the worktop it was like my brain said okay that’s a good place to let go of that plate, and it of course dropped to the floor and smashed into a hundred pieces.

My partner came through to check I was okay and started to clear it all up, he asked if it slipped off the edge and I just burst out crying 😢 trying to explain no, I just let it go before it was actually on the worktop.

I know that dropping things can be common in MS with things like numbness, sensory loss, tremors, weakness, etc. But have many of you experienced something like this where it feels more like a decision your brain made? I don’t know if that’s the right way to explain it!

I’m still feeling pretty upset about it. I think it’s the feeling of not being in control that’s upset me, and the confusion of why did I do that.

I hope you’re all doing okay 🩵

I was diagnosed with MS six months after having my first child, who’s turning two in a couple of months. I’m also now pregnant with my second (only 8 weeks along). I came off my kesimpta treatment as soon as I got my positive pregnancy test. Obviously, being diagnosed so soon after giving birth, coming to terms with diagnosis, all the appts and starting treatment has been a totally whirlwind, and the decision to have another baby has been a big one but ultimately one we knew we wanted.

It just dawned on me that my son and any future children will never know me without MS, and that’s just… made me sad! For those of you who have children, how has it been? Do you find your MS impacts your life and ability to parent? Do you just get on with it? Everything happened for me so quickly - I don’t really know if MS has affected my parenting. I don’t know what kind of parent I’d be without MS. I don’t really know what my point is but I suppose I’m part ranting and part hoping to see some wholesome or reassuring anecdotes of parenting with this rubbish disease. Thanks!

Okay, I'm so done with multiple sclerosis.

I can tolerate the numbness, the pain, the memory faults, and the heat intolerance (with AC).

But the constant fatigue, that winding-down "running out of energy", is so damn annoying. I used to be able to work at high-speed back to back 12-hour shifts (with 1 hour lunch between) moving literally tons of material with my own body, and still be ready for more.

I have cleaning to do, things to get done, but NOPE. Gotta get tired real quick just walking up the stairs! Oh, you've been "functional" longer than 4 hours? Then you must get back in bed and try to have a nap!

Who do we see about returning this life-changing disease?

Diagnosed back in February at 45 (f), lost feeling on my left side from face to foot, spent ages on steroids which took a huge psychological toll on me unfortunately but ive since recovered from a lot of that.
I’ve regained pretty much all physical functions but i still have extreme tightness around my head and pins and needles on the left half of my face and hand.
Its been 8 months.
Is it silly to hope that these things go away or chill out even though its been so long already? I started kesimpta three months ago but im not on anything else.

Dont get me wrong i am VERY grateful for what i have recovered and am fully aware that it could be worse but im still just scared and sad and ultimately incredibly uncomfortable in my body.

I was diagnosed with a biggish lesion on my pons/brain stem, 5-6 small ones scattered on other parts of my brain (neuro didnt seem concerned about these) and a tiny one on my cervical spine and tiny on on my thoracic spine.
I often read about how its not the number of lesions its the location but i don’t even know what that means to be honest. Are my locations ‘bad’?

I want so badly for life to get back to some semblance of normal and to know if these symptoms have any hope of subsiding still.
And also i guess i wonder how we are meant to not live in fear of progression.

Sorry i know this is so long but really needed to let it out today

Thanks so much

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.

I'll try to keep this brief but have been having a lot of difficulties with word finding lately. Anyways, 32M diagnosed 2 years ago and have been on Ocrevus. In the past year I've fallen 3 times, 2 were unexplainable, where I blinked and was on the ground. I've been struggling with memory and cognition, my right leg has been giving me problems like tightness and weakness and I've reluctantly got a cane. But my neurologist says my MRI is stable (no change in lesion count/size) every 6 months I can see her. The worst part is lately I've been experiencing what I consider to be pretty significant (for me) cognitive changes. I'm writing this post because the major one I experienced yesterday, felt like my brain had a sensory input lag...very hard for me to describe, but it felt like every sense, hearing, sight, touch, taste, smell took a split second to even register before I could interpret it. Almost went to the hospital last night because of how terrified I was. Still a bit foggy today, but not as bad as far as I can tell. I guess what I'm wondering, is if I can even get worse symptom wise without the explanation of lesion progression. Don't really have anyone reliable to learn about all this and I'm out of my depth. I have a bunch of comorbid conditions like depression, anxiety, and suspect that I might have some mild OCD and Autism, but have always been too afraid to get diagnosed for those. Any advice is appreciated, but not too interested in some generalized kind words. Sorry for the rant, and being all over the place.

Before my first flare up and then diagnosis, I was a massive foodie, I loved treating myself on Fridays to thing I know probably aren't the best for me, but that I looked forward to - a pizza, a smash burger, some pudding, and binge watching my favourite shows and taking a big nap.

My first flare up happened and it was very severe, I basically needed help bathing, walking and cutting things with a knife and fork. I had no idea what was happening and ended up in Hospital, once the diagnosis came through, my family scrambled, everyone they talked to knew someone with it, and a couple of people close to them recommended the "Overcoming MS" as a life changing, disease ending type of hail-mary, and put me on it right away.

To make a long story short, I had to move back in with family to support me because I'm still not able to drive and can't walk very far anymore, and I've been paused from employment for now since I can't perform my usual work, but the worst of all is the helicoptering, and policing of what I'm eating.

I'm still very new to being diagnosed and living this way, and of course there is strong supportive evidence for diet having an effect in the disease, I read the book to it's end, and through the whole way I felt like everything that happened was my fault.

The diet is extremely strict, and so hard to cater for especially as someone who's never ate like that in their life, my family culturally has meat and dairy as a massive part of it, so while they eat lamb chops, I'm offered Tofu and Rice. (There's a lot more restrictions than just that, even vegan alternatives are forbidden due to the "solid fats" exclusion and avoiding all processed stuff, and I'm getting sick of fish which is so expensive in my country already)

I feel pathetic for being so depressed about something as simple as needing to eat "healthier", but food was one of the things I treated myself to on the rare occasion just to congratulate me for getting through the week, because I struggled with life and it was one of the few things I could promise myself that would be enjoyable, now I'm not even allowed a piece of chocolate or anything, for the extreme fear and paranoia baked into my life that it will cause me another flare up because my family was put through the OMS pipeline first thing.

I don't even know what I'm really asking here other than venting, I just wish this never happened to me, I already had so little I was happy about in life to begin with.

For me, writing works therapeutically; it brings me to the deeply hidden emotions I experience but barely take the time to feel. This weekend I'm home alone and took the time to write. It may not bring joy, but it brings relief, and I think that’s exactly the headspace needed to experience joy again.

Maybe it helps to read, for me it helps to share :)
________

One year on. A new baseline has been set. I adapt to my possibilities, but with each passing day, I become more aware of the impossibilities.

At first, I was terrified of losing you -secretly, I still am sometimes. But do you know what terrifies me most of all? That I have lost a bit of myself.

I feel guilty when I eat poorly or don't move enough. I feel uncomfortable the moments I hit my limit: standing or walking for long periods, or simply getting exhausted from the sheer excitement of doing something. When I hold a drill, at a certain point, I can no longer press the button. And apparently, my grip gives out after sanding for a while, too.

I want to be able to run as fast as I can, dance without a care in the world, walk for miles in high heels. And I don't care that running always hurt my hip, that I wasn't particularly good at dancing, or that -as my sister put it- I 'walk like a horse in heels'.

I want to be able to consciously say 'no' to the things that have been taken from me now. I want to choose for myself, rather than having my body decide for me.

Writing this while feeling so hopeless ! My loved one is currently incarcerated and they took him to the hospital on September 25th and we have yet to
Hear from him. He has MS for 10+ years now. PCP office called and told us if he was in jail because he received a call asking for medical records for an incarcerated patient of his. Pcp office only said it’s due to MS. We have yet to hear from him. I contacted the director of corrections for that county and she had someone call and explain that he was in hospital and was going to rehab for 1 week. No more info was provided and I just been told he’s still in the hospital . I’m so scared , how bad is this relapse that he has been there for weeks ? Has anyone been in the hospital for weeks for a relapse ?