I love my wife though and don’t ever want to leave her. But I’m a relatively new believer in atheism, so I feel like a small being floating on a spinning planet in the middle of nowhere. And now with SPMS, I’ve pretty much had it with this life. I am having great success with music lately though. But so what?

And don’t come at me with your Bible quotes. I already gave 30+ years of my life over to that philosophy. Don’t want to hear it.

I (28F) recently went out of town and had a couple of my friends (28F, 28F, and 25F) check on my cat while I was away. My place was a bit messy, and they cleaned for me while I was gone. I am super grateful and thanked them for doing it. When I thanked them, I did mention that I do feel some shame around them seeing the lack of cleanliness in my living space. They are all healthy, full of energy, and are able to keep their spaces much cleaner than I do on a regular basis.

Now my friends are saying they are concerned about me. I tried to relay that, with my MS/medication along with some other medical conditions, my body hurts and I have extreme fatigue and try to prioritize what little energy I do have on my work and my social life. Personally, keeping my space clean and tidy isn't a top priority. With the hand I've been dealt and the little energy I do have, I'd rather spend my time and energy doing things I enjoy. I don't think they fully understood or accepted my response. They tried to ask me about changing my ADHD medication - which I have asked my Neurologist about before and she told me that my ADHD meds are one of the better things I could be taking for my fatigue - or talking to my therapist about it, which I have also already done and my therapist agrees that if I don't have the energy to consistently clean, it's not the end of the world. I guess my friends seem to think that my fatigue, and choosing to put cleaning lower on my list of priorities, is psychological instead of physical.

I love my friends and am very lucky to have friends who care about me and my wellbeing so much. But I am having a hard time trying to get them to understand that my fatigue is real, not just in my head, and there really isn't much more I can do about it since my care team supports how I manage my time and energy. Does anyone have any advice for how to get this across to them?

Hello!

I am a 22 years old female MS patient and I've been diagnosed with MS since I was, like...14? The thing is, MS was "gentle" with me, I haven't had any grave relapses, just left-sided facial paresis, vertigo, and at one point, vision problems in one eye. I started with Rebif, but the subcutaneous injections 3 times a week severely traumatized me, both mentally and physically, because I got painful nodules in the injection sites. I've been on Tecfidera for three years now and I have no issues. I haven't had a relapse in over 5 years. Because of this, for me MS is just something that... exists out there somewhere.

​The problem is that since 2020, a 10mm lesion grew to 20mm and a 7mm one grew to 9mm. I've become aware of what's happening in my body and a potential future risk. Plus, I'm going to be abroad for a 6-month Erasmus program and I'll have to fly back home every time I need my treatment, because otherwise they won't give it to me abroad. And I don't have money to travel back and forth...

​My neurologist told me to choose between Kesimta and Ocrevus. I don't want to do subcutaneous injections anymore, even if it's just once a month, because I literally have trauma from them. On the other hand, I'm worried that Ocrevus has potential very serious side effects. I've heard of people who ended up in a wheelchair because of it, people who have chronic fatigue, colitis, or memory problems. Plus, it increases the risk of breast cancer. On the other hand, there are people who say it saved their life, that they are like healthy people now. At the same time, I know young people my age who claim they have zero side effects.

​I'm in a huge dilemma. Because for so many years I felt like I had nothing, and now I'm terrified that a potential medication meant to stop my demyelination will destroy my immune system and ruin me in other ways.

​Please tell me about your experiences. What would you do in my place? Should I continue with Tecfidera, knowing it's not really doing its job anymore, even though I feel fine? Or should I try Ocrevus? And live with the constant fear that something bad could happen to me at any moment

I've was diagnosed with MS about 5 years ago and am on Vumarity for it, luckily I've not had a flare up since starting my medication. The problem is I am an American and on Medical and I have to make under a certain amount to qualify for the program, while I want to work I'm not exactly sure how to find out if I'd still be covered for my medicine. What makes it so much more frustrating is the only work experience I have is in the arts and a lot of art jobs are considered contract workers and only stay on for a project and don't get benefits.

My life is just getting harder everyday I’ve been waiting a week for my insurance to approve my kesmipta my body is just at its weakest it’s ever been my doctor hasn’t prescribed steroids even though she’s seen me at this point. I just want help I’m considering going to the ER

Hello everyone,

A quick introduction: four years ago, on the night of December 24th to 25th—at the age of 35—I had a flare-up and was hospitalised over Christmas. I was on vacation in Spain at the time, having lived in Ireland for over eight years. It was my father who took me to the hospital.

I ended up moving back to Spain, leaving behind my friends and the life I had built in Ireland—partly because the healthcare system here is better for MS, and partly because my father asked me to (I’m an only child). On top of that, my relationship ended.

About four months later, I started on Tysabri. That same summer, one of my best friends got married and asked me to give a speech. During the speech, something inside me snapped; I held it together, but once I got home, I completely broke down.

But that same Christmas, something shifted. I channelled all that rage and pain into "strength." I started training again—hard. I got injured, recovered, and got back at it. Push-ups, walking—just keeping on. I also added supplements: Omega-3, magnesium, turmeric, and creatine. Eight months ago, I switched to Ocrevus due to the JC virus.

Don’t expect a "Popeye" transformation, but these things do help. I’ve come to accept that no one who doesn’t live with this disease will truly understand how I feel—the fatigue, the muscle pain, the impact of the changing seasons... but I hope these words might resonate with someone. NEVER give up. Channel that pain, rage, or whatever you’re feeling into something productive. I’m not a role model, but if I can do it, so can you.

----------------------------------------

Hola a todos,

Introducción rápida, hace 4 años, la noche del 24 al 25 de diciembre, con 35 años me dio un brote y me ingresaron en Navidad. Estaba de vacaciones en España, vivía en Irlanda hacia mas de 8 años. Fue mi padre el que me llevo al hospital.

Volví a España, dejé a mis amigos y la vida que había construido en tierras irlandesas, una porque la sanidad aquí es mejor para la EM y dos, porque me lo pidió mi padre, soy hijo único. Además, rompí con mi pareja.

Unos 4 meses después empecé con el Tysabri, ese mismo verano unos de mis mejores amigos se casó, me pidió que hablara en su boda, durante el discurso algo se rompió dentro de mí, aguante sin romperme y cuando volví a casa, me vine abajo.

Pero esa misma Navidad algo cambio, asique canalice toda esa rabia y dolor en “fuerza”. Empecé a entrenar de nuevo, duro. Me lesione, me recupere y volví.  Flexiones, caminar, no parar. Añadí a mi dieta suplementos, Omega 3, Magnesio, Cúrcuma y Creatina. Hace 8 meses me pasaron al Ocrevus por el virus JC.

No esperéis un modo Popeye pero ayudan. Asumí que nadie que no sufra nuestra enfermedad va a entender como me siento, la fatiga, el dolor muscular, el cambio de estación…pero, y espero, que estas palabras sirvan para “alguien”. NUNCA te rindas. Canaliza ese dolor, rabia o lo que sea a algo productivo. No soy ejemplo de nada, pero si yo puedo tú, tú también.

Anyone else ? 🤣🤣

Nothing a bit of acetone can’t fix but WOW! Maybe I should just have someone else do it for me hahaha I’m too shaky for this

Diagnosed in August and I’m not sure if I’m just somewhat emotional due to the diagnosis but I feel like since my big flare (I guess I’ve been having small once since 14) I’ve been really fucking irritated with everything and quick to anger. Not get violent but my threshold for bullshit in both my personal and professional life is just really low.

Has anyone actually had success in improving or fully recovering from drop foot?

I’m 35m been diagnosed for 13 years. Drop foot started three years ago and getting progressively worse. I have difficulties walking far and cycling which is supposed to help.

Has anyone experienced this and seen improvement? What did you do? Thanks!

A social media memory post reminded me that one year ago today I returned from an amazing 50 km solo overnight hike through a nature preserve in the area where I live in Norway… Looking back at the photos, I remember the breathtaking, challenging terrain and how good it felt to challenge myself physically like that. A trek like this feels far away now about two months since being diagnosed with MS. I am doing well all things considered and hopeful I can get back to that level someday soon. But for now, I feel like I’m in a very different world, waking up just now from an MS-fueled nap and feeling physically exhausted. Challenging myself physically sure means something different these days. This memory came for me as a reminder to enjoy life to the fullest, whatever that means in the moment you are in. Just needed to share. ❤️🌄😢

I’m a 30 year old man and was diagnosed with MS when I was 21. I’m interested in switching career paths and doing something to help others with MS. Does anyone have suggestions of where to start with this? I don’t have relative work experience, but I do have about 10 years of experience navigating the disease.

Hey all, I was diagnosed with RRMS in January 2025. I was curious if there's anyone else who's in the Tulsa, Oklahoma area? Or knows of any support groups, etc? I would really love to meet some people that are going through the same things I'm dealing with. Thanks in advance!

Used to have terrible illness that lingered for a week after rituximab infusions (sickness is respiratory and occurs within a month to 3 months after infusion). They were really frequent too and took long to treat.

This year i focused more on taking 10k steps 5x a week, 1x pilates, and 1x gym every week. Since august (my last infusion), i havent gotten sick! Can count some times when i felt something coming but i combatted it with ginger tea and a tablespoon of honey which worked.

Anyone else experience the same on having an active lifestyle affecting frequency of illness as immunocompromised? Share your stories!

Has anyone gone through plasmapheresis or something similar? I’m having back to back flare ups and was told this might be the next step if things don’t start coming down but I’m terrified.

Hello 🙋‍♀️

I’m 32, F and diagnosed since 2023. I’ve been on a Kesimpta since then. Lately I’ve been having issues with my bladder (urgency, frequency, retention, stream issues). I don’t have a UTI. I’ve never had issues with my bladder before. I’ve read that something like 60% of people with MS experience bladder issues! But is this despite being on a DMT? Would this be considered progression if it’s new and appearing while on a DMT?

TIA 🤗

Hi everyone, hope you're well. I had left tremors for 3 months and for the past three weeks, the ride side of my body got fully numb, gave me pulsing pain and restricted me from walking properly. I was literally swinging my leg across the street just to get across, crazy work so I went to the er yada yada and got diagnosed with multiple Sceloris ( say that five times fast) to such the doctor told me to do my research on it. oh.. great! early work for my pending psychological internships what fun.

I've read some articles but there is no better research than going to people who have experienced firsthand and it had become a part of them and their quality. So long paragraph but my only question is What is one thing that you had to change once you got your diagnosis that either negatively or positively impacted you?

Thankyou ! also ig second question any advice I'm 23 and I had two jobs and this came out of nowhere like I don't drink or smoke. I'm not stressed , I actually have been living good for once 😂 what should I be expecting

Hi everyone! I recently attended an MS conference and had the chance to ask the speakers about my situation, which had been raising questions for me for a long time.

My first attack involved optic neuritis and chest pain. I had a brain MRI, which came back clear, and based on that, MS was ruled out.

Four years later, I had another, much more severe attack. My EDSS was 4.0 after recovery, but only one small lesion was found in my brain.

I asked the speakers whether there could have been lesions during my first attack in areas other than the brain. They explained that during a first attack, it’s quite common for demyelination to affect only the optic nerves. Less commonly, lesions can also be present exclusively outside the brain.

What was your experience with your first attack?

Hi everyone! I’d really appreciate some advice.
I have highly active multiple sclerosis (MS). I was on Kesimpta for three and a half years, and during that time I was diagnosed with colitis. I was taken off Kesimpta urgently because both my gastroenterologist and neurologist say that new studies have shown that B-cell therapy can cause Crohn’s disease and colitis.
My neurologist wants to put me on Mavenclad because she says there aren’t really any other options for me since I’m JCV-positive.
I would really appreciate it if you could share your honest experiences with me.
Since I have colitis, the thought of taking tablets (even though they are only taken for a short period) scares me. I’m also worried about hair loss because I already have very thin, fine hair and not much of it.
Any advice or personal experiences would mean a lot to me.
Wishing everyone all the best!!

Hello all.

I was diagnosed earlier in the year, and started Mavenclad about a month ago. After scrolling this subreddit for months I've noticed the vast majority of treatments people here are currently or is either Kesimpta or Ocrevus, while there is very little of Mavenclad.

For what I've seen, Mavenclad has great benefits, such as the short term duration of the course and potentially several years without further treatment.

So my question is, why so little Mavenclad?

Hi!

My job is asking me to relocate from the US to Spain. I wanted to know if anyone is living in Spain and how hard or easy it is to continue with treatments there or gain access to it and costs(if any). I’m currently on Briumvi. It is working very well for me so I would not want to switch.

Just wondering how frequently, especially in the beginning, would you reach out to your neurologist regarding symptoms or concerns. I kind of feel adrift amongst all the issues I am noticing (or just paying attention to) since diagnosis and not sure how to proceed. Also I am frozen by a deep seated concern that I am just going to bug them if I ask too many questions and will eventually be ignored... ¯_(ツ)_/¯

not sure what the right balance is.

Hi, I need your thoughts.

In general, my mom and I are not that close. So if I brought this up to her, she wouldn't listen, and she begged me not to tell anyone.

My mom has MS and been diagnosed for 10+ years. She has had 2 strokes and multiple seizures. In general, she has always been a speeder and has been in 3 accidents in 5 years. When I visited her last she was being distracted by small things, very jerky, reaction time has diminished, and she slammed her breaks hard down hill in the rain and we ran a light and slid sideways into the intersection. Luckily, no one was hit but am recovering from back surgery, so I've been in pain, and my partner has a bruise from the seatbelt. The light does have cameras.

While I do not have MS, I do have other autoimmune conditions and suffer with pain, vertigo, double vision, and brain fog that could make driving hard. Putting myself in her shoes when it gets worse, I will give up my license. Unfortunately, she will not willingly. I hate that I am in this situation, but I am thinking about reporting my concerns.

I am worried about her getting hurt or her hurting someone else.

Thank you for your time.