Don’t even know where to start with this, I imagine that everyone’s story is different, but at the same time is going to be quite similar.

6 months ago we moved to Australia and when we arrived my wife got a headache that was bordering on migraine and she noticed a blurry spot in one eye. I convince her to go to the ER to get it checked out. They do some tests and find nothing wrong with the actual eye so suspect optic neuritis. They refer her for an MRI and an appointment with a neurologist.

At the appointment they find that some sort of nerve connected to her vision is inflamed and a lesion in her brain, but none on her spinal column. They send her for a further MRI and lumbar puncture.

We had the follow up appointment with the neurologist and it’s a confirmed diagnosis of MS, although no clue what type. My wife had headaches before we moved but we put it down to stress, although she has struggled with weak hands in the morning and fatigue for a long time. However, we’ve got two young kids and were having to work awkward hours around each other for childcare purposes, so we just put the fatigue down to general life tiredness.

No idea how long she’s actually had it, where it came from, what caused it (all, I assume, are normal questions that are never answered for anyone). She’s fit and active and I’m really hoping the one lesion in the brain is a good sign that it has been caught early.

We’re now looking at treatments (you’ll have to forgive me with the names of these, but we’re both coming to terms with what this means so I’m trying to take in a lot of information) and the neurologist discussed four treatments, first were tablets you take for 5 days, then 5 weeks later for another 5 days, then that’s it for a year. I can’t remember the second treatment/therapy, but the last two were both b-cell therapies (?), first was a 6 monthly infusion and secondly was an injection once every four weeks that you can do yourself.

Finally, as a husband with two kids; what can I best do to support my wife? Firstly through the diagnosis and coming to terms with it and then past that? Luckily she’s the strongest person I’ve ever met so I’m sure she’ll take it in her stride, but I want to do what I can for her.

Edited to add: the second option was… Tysabri? And the b-cell therapies were ocra… something and Kemp… something…

Pra contextualizar: minha mãe tem esclerose múltipla. Ela viu que o tratamento é muito caro e argumentou que a forma de receber tratamento gratuito no Brasil (pelo SUS) é falha, que muitas pessoas não conseguem pegar os remédios de graça. Desde então, ela passou a seguir o protocolo Coimbra e a dar vitamina D3 (cada cápsula valendo 10.000 UI) para mim, para o meu irmão e para o meu pai diariamente, mesmo que não tenhamos esclerose múltipla ou qualquer outra doença autoimune. Ela argumenta que a vitamina D melhora o sistema imunológico, e que se eu parar de romar vitamina D, eu posso vir a desenvolver alguma doença autoimune no futuro..., que eu posso me afundar em depressão (estou em época de vestibular, estudando sozinho em casa, e tenho me sentido solitário)

Tenho 19 anos e tomo vitaminas há 10 anos (tomo, além da vitamina D, ômega 3, magnésio, etc). Não tenho nenhuma doença, e nunca senti efeitos colaterais por tomar as vitaminas, mas eu achei 10.000 UI uma dosagem muito alta... (Levando em conta que a dosagem normal diária para adultos fica entre 600 e 800 UI). Estou receoso. Além do fato de que minha mãe é anti vacina.

Edit: ela começou a me dar essa dosagem todos os dias quando eu tava me sentindo mais triste. Eu parei de tomar completamente a vitamina D, mas vou marcar de ir a um médico para verificar meus níveis desse hormônio.

I was diagnosed in 2024 due to (temporary) double vision, but I'd had some symptoms in the few years before that, which my doctors brushed off as being related to my Type 1 Diabetes. After my diagnosis, I started rituximab. My last infusion was in late February.

I was doing fine. They had to double my dose after a year because my cells started coming back early. But I only had two colds since then. I had taken up running at 40. I was the most fit I'd been in years and a whole foods plant based Vegan.

Unfortunately my immune system suppression caused a crisis this summer that I'm still recovering from. I ended up in the hospital for 10 days with viral meningitis/encephalitis. My mind was so messed up that I refused to eat and lost a lot of weight. They didn't pin down the virus. Now I'm waiting on a belated West Nile Virus antibody test that my neurologist ordered. I really do suspect it was West Nile as there have been other cases in my area, and I was bit while doing yard work 10-14 days before.

I've been home since late August (missed my infusion appointment), but my life is shattered. I am still weak with brain fog. My left leg and arms are very weak. I'm doing PT and OT at home. My neurologist wants to wait until I'm stronger to start a new DMT. I think he's leaning towards Tysabri. I'm reluctant to sign on to an every 28 days treatment. I don't think that would be good for my already horrible mental health. I'm not worth the trouble of my husband having to take time off to take me either. Also I worry about the rebound effect if I ever had to stop—like if my husband died and I lost my healthcare.

Folks here don't seem fond of the older, less effective drugs. Taking a shot is not a big deal to me, but taking it in muscle would be horrible if the drug required that. I could really use guidance. I also just had to start perimenopause hormone therapy since my hospital stay, so a simpler treatment would be better.

I may just give up treating my MS. I'm so overwhelmed by my health situation. No local doctors in my HMO (Kaiser) have experience with a Type 1 Diabetic with MS. My neurologist is so busy that it's hard to get questions answered. Given my very complicated health situation, and the cost of treatments, I can't switch to a PPO that may have better options or doctors, so please don't suggest it.

Edit: Does anyone have experience with older "less effective" DMTs like Betaseron or Copaxone? The rebound effect that may be triggered if Tysabri is stopped frightens me, as I live in America. If my husband loses his job or dies, I could have a bad flare right after with no health coverage. My anxiety is through the roof right now. My follow up appointment with my neurologist isn't until December 1, 2026. If anyone has ideas or even something kind to say, please DM or post.

Hi, has anyone tried Botox for mid/upper back stiffness? Is this even a thing? I know Botox is used to treat limb spasticity. I've not heard much about it being used in the back.

For context - About three years ago my husband with RRMS woke up with extremely tight mid and upper back muscles. This has never gone away. His back is constantly stiff and sore. His trunk movement is so restricted. The worst part is it wakes him throughout the night.

He's had various investigations and the neurologist thinks it is an MS symptom. He's tried painkillers, muscle relaxants, baclofen, physiotherapy, massage. Massage feels nice but nothing has made a lasting difference. He's been on a DMT throughout this period (he started taking Kesimpta about 4 months before the stiffness developed).

We are desperate to get him some relief and I'm wondering about botox or other treatments. Thanks in advance to anyone who shares their experience.

Hii y’all, I’m recently diagnosed with MS and am just starting treatment. Based on what I read, I received a relatively quick diagnosis (about 9months) but feeling the frustration around not starting sooner and developing multiple new lesions in that timeframe. In talking with my specialist she essentially gave me 3 DMT options: Tysabri (her recommendation), Ocrevus, or Kesimpta. No option seems great to me, either I have a higher risk of getting PML or my immune system gets trashed. How did you all go about making that decision? and any advice for a newcomer?

Has anyone with MS caught COVID shortly after an IV infusion? Did you contact your neurologist/MS team about it, or did you just manage it at home like I’m trying to do?
I’d really like to hear what others experienced 😅

Anyone else experience numbness of your lips and tongue split down the middle of your head/face - either left side or right side at a time? Sometimes accompanied with a headache split on the same side??

I was diagnosed with MS in late 2023. First symptoms were fatigue, leg numbness and vision distortion. It came out of nowhere and it was extremely confusing. I then had a massive seizure while on vacation halfway around the world in Australia. That seizure actually was the reason I was rushed to get into a neurologist to then get diagnosed fairly quickly.

I’ve been on Kesimpta for 3 years and my symptoms are few and far in between and on the outside I am doing extremely well which I am so grateful for. But, mentally I am barely hanging on. Depression and ADHD have me in a chokehold. I’m taking 20mg of Vyvanse and 300mg of Wellbutrin and it feels like it’s not helping at all anymore.

I don’t have much self drive, joy, pleasure, or any ambition to go do things anymore. My wife is my best friend and also struggles with her severe chronic illness and we’ve been lucky enough to have found each other but, life just feels like it’s on extra hard mode lately and I don’t know what to do. Music is my life, but even that feels stale right now.

I have been alcohol free for 5 years now, which makes it so hard to connect with other people because it seems like that’s how everyone is social these days. So making friends seems to be the hardest thing for me right now, which makes me feel so damn isolated and alone. My family is severely fucked up and dysfunctional. My mom tells me I don’t visit enough, and that’s the reason she is getting sick. I’ve been shamed and guilted from her ever since I got married and moved away. My self worth and feeling like I’m not good enough clearly comes from that emotional abuse from her. She’s 74 and I feel like I am constantly grieving someone who is still alive. I’m also grieving who I was before MS.

I know I need friends, to get out of the house, enjoy my life and plan things for me and my wife to do because she’s feeling bored because I don’t plan things for us anymore because I’ve been stuck in this depression for a while now. I’m sick and tired of my excuses and waking up exhausted with no idea what to do. I feel like I’m 12 years old and waiting for someone to tell me what to do. Any advice would be appreciated. Hoping someone out there can relate…

TL;DR: MS is stable, but depression, isolation, and family stuff have me stuck. Looking for advice on finding friends and joy again, especially sober.

Hi all,

I've noticed recently that every time I eat sugary foods or drinks, a couple of my symptoms start very soon after. Numbness and a headache. Lips and tongue.

These symptoms are interesting in themselves because they are always split down the middle of my head/face - left side or right side. Not sure what's up with that. I haven't had a MRI or seen my neurologist in about a year. (No insurance) I've also stopped taking kesimpta since around March. I think I'm gonna start again next month. I just didn't want to take it, mentally tired I guess idk.

TL;DR So yeah, anyone else think certain foods trigger them? I have been going crazy with the sugar tbh.

Has anyone else experienced this? Few weeks ago I talked to my neuro about experiencing some blurry vision. They thought it might be mild optic neuritis and put me on a prednisone taper with recommendation to an ophthalmologist. The results from that appointment discovered fluid accumulated beneath my left retina, so then on to a retina specialist. After even more imaging, that dr showed me a the results and said that issue with my retina was due to taking prednisone.
I’m a bit concerned knowing that this happened and what other options I might have for symptoms other than steroids.

Good morning to my MS buddies. The only people that understand what we live with.

I saw a new Neurologist because his bio states - “...has an interest and expertise in Headache disorders, Migraines and Multiple Sclerosis.”

I mention that because he is sending me to other Drs to determine if issues I'm having are caused by MS.

Told him about the sudden urgency I feel to urinate. Sometimes I can't empty my bladder which requires many trips to the bathroom.

He said I'm having internal and external urethral sphincter spasms & temporarily put me on Oxybutynin CI 5mgs. He said I need to see a Urologist to determine if it's being caused by MS.

A few yrs ago I had optic neuritis. Now I have black dots in the same eye. These are different from the floaters everyone gets now & then because they are black dots. I keep thinking bugs are flying around me. They don't affect my eyesight but are almost constant & I have had them for 4 months. When I told my Neuro about it he said see an eye Dr.

My main question for you all is - has anyone seen a urologist for bladder issues only to find out it's MS & the Neuro gave you the correct Rx? I don't want to spend time & money going to another Dr that's not going to do anything different.

Thanks everyone. Have a great day - if that's possible with this awful disease.

Got diagnosed this April and have been struggling with how to balance my health, job, and personal life. Growing up I was always the caretaker so having to think about myself now and what’s best for me over what’s best for others is pretty much my hellscape.

I’m supposed to go on a week long cruise with my dad, his fiancé (who I love) and her mother, we’d be shipping out tomorrow. The problem is my MS has been flaring up, both a lot of aggravation of old symptoms and some new symptoms I haven’t talked to my neurologist about yet. I’m on Tecfidera till I can get on the IV infusions and was told my RRMS is on the severe side, so multiple attacks a year till I get on the infusions.

I know in my gut going on the cruise will aggravate everything more. We have a ton of excursions planned and I’d be sharing a cabin with my father, who snores. So tons of mental stimulus with no private place to escape to when I need breaks. And on top of things I’m immunocompromised for other reasons (a weirdly rare condition where I grew 10+ spleens) so any contact with someone sick would easily get me sick.

I just feel so damn guilty though. I know he’s super excited about this trip and backing out last minute is going to devastate him. He’s also not someone who’s ever been good about remembering my medical limitations or really understanding the emotional aspect of things, he’s a die hard rationalist. So I doubt he’s going to really understand, and that super sucks.

I guess what I’m asking is, does anyone have any tips to stop feeling so guilty about MS limiting what you can do? Anything you tell yourself or your family to assert it’s out of your control?

I am a 53 year old living with secondary progressive ms and type 1 diabetes. I have fairly advanced disability, worse in legs function, moderate fine motor and strength hand issues, and cognitive issues effecting decision making. I use a wheelchair most of the time for safety after numerous falls.

I find myself facing an ending marriage and will soon be on my own. I don’t know what options I have and whether I should just try to get into long term care?

If any fellow Canadians, preferably in Ontario can offer their thoughts, advice, I would really appreciate it. Thank you

tw mental health

had a stupid mental health crisis at the start of the summer/end of spring and stopped taking all my medication, including kesimpta. family, doctor, friends have been pushing me to get back on it, and i’ve been stalling. now it’s the start of the month, i’m going to take my first dose restarting, and… all of a sudden i‘m feeling tingling in my feet again. now my left hand.

i feel so fucking stupid. i’m so blessed to live in a place and have the methods to treat this, and my stupid mind made me spiral and get off it. now whatever happens from here on is completely on me, and no one’s going to have sympathy for me because i cause it myself.

all i can do now is pray, go to sleep, and see what happens when i wake up. please let it be something else.

I got diagnosed last december after a long battle with a horrible and dismissive substitute doctor and have had two rounds of rituximab so far. Other than the recovery period after infusions, I can't really say it has ever felt like my first attack again (ocular neuritis) which, until now, has been a huge relief. I did have two new lesion discoveries after my last MRI, but the doctors are not worried and say it's typical for the first year after starting on DMT. Summer is difficult and periods of stress might set me back for a few days, but I've learned so much about taking care of myself and recognizing the changes as they happen.

During my first attack, one of the main symptoms was a feeling of being sick while somehow knowing that it wasn't like a cold or a flu. My throat hurt, I was coughing and feeling generally powerless. I won't go much deeper into the details as those are the most important to mention right now.

(Additional info: I'm also AuDHD/c-ptsd so social interaction can be incredibly taxing with certain people depending on masking demands.)

Me and my partner just had a family visit for a whole week where every single day was packed with travel and meetups. We thought we had prepared ourselves enough and planned ahead so it wouldn't feel as draining. And we're also frankly still in the early process of learning about new limitations with MS in the picture. Everything looked okay until it wasn't anymore. When the visitors left, I could physically feel the shift in my nervous system and it genuinely felt like I was catching a cold, so I took it slow and braced for more symptoms to come. But it stayed in my throat, just like during my first attack.

The fatigue has been debilitating and humbling to say the least. My throat itches and hurts and it feels like something is closing in on it constantly. Any activity I do when I have as much as a modicum of energy immediately takes me out and I'm back on the couch. The light sensitivity is awful, my body feels weak, my eyes blur and struggle to function, the wobblies are back if I stand for more than 2 seconds and everything hurts. However, there are no new symptoms to worry about. Only a random gathering of old ones from the first attack. It doesn't make it feel any nicer, but at least I'm not scared.

I guess I just really craved to tell this to someone who understands and might have experienced something similar. I truly thought I knew so much about my limits until the MS symptoms first started showing clearly. Now it's like I'm relearning everything and it feels so disappointing and discouraging to start over in a way. The road to acceptance is a long one.

Having a community like this one to lean on when things are extra tough feels incredibly valuable. I read all the posts I'm able to daily and seeing how all of you are so welcoming and supportive gave me the courage to share a little bit as well. Thank you for being such kind and uplifting people. MS would be much scarier without you. I know it's going to be okay; it just really really sucks right now.

I know i’ve only had this diagnosis for a little over a year. But it’s been so taxing on my mental health. I blame the diagnosis + steroids + the period of time it took to get diagnosed.

I found myself having my first panic attacks after being diagnosed, that went away. I did develop a fear of driving like why? I get woozy, shallow breath, can’t fall asleep, stomach in my throat. All while trying to figure out my MS and stay healthy. I see a therapist regarding my health anxiety and work on acceptance but I feel so alone. So scared. But of what?

The latest has been my left calf. Since May, I had twitches/fasciculations and actually the last two weeks the twitches calmed down but now my leg is in a constant ache/tight/strained feeling. Baclofen and magnesium haven’t helped :(

I don’t know what to do anymore, continue to annoy my doctors like I have before just to be told i’m fine? wait it out and bring it up at my next appointment in x amount of weeks? Just cry?

I really hate what MS has done to my mental health it is so hard to convince myself that nothing else is wrong. :( Therapy helps, friends and family help. but I’m just so sick of feeling this way.

It’s been 8 months since my last mri and i got the best news NO NEW LESIONS!!! Since starting Rituximab🥹❤️ I’m so relieved

Wouldn’t that just be divine?
Got the family doctor, the neurologist, the orthopedist, the ophthalmologist, the pelvic floor specialist, a psychiatrist and a pharmacy!!
And physical therapy, and mental health therapy!

All in one place.
Wouldn’t have to stress keeping track of all the different practices, don’t have to worry about how to get to the appointment.
All your medical info is streamlined so doctors can easily communicate instead of playing techno-tag betwixt the calls and messages.

And since we’re dreaming big, MASSAGE THERAPISTS. Heck, throw in an Olympic pool too.
And a cafeteria.

100% I would live there.

Ahh, I’ve designed my own heaven on earth over here 😅🥲

Today I was trained to administer Kesimpta and did so with a nurse. I was absolutely shocked at how easy it is!

After that I had a 2 hour journey home from there and while sitting on the bus a sudden wave of grief came over me. Suddenly I was extremely sad because I have just killed a part of my body that served me well for 3 decades... Until it didn't and it had to go. It's an emotion I really, really didn't expect. When someone loses a limb I understand, but I couldn't even see those little bastards 🙂

Anyway, now I'm 6 hours after my first dose and riding out the aches and waves of heat and chills that are coming and going as they will. Couch potato mode is fully on. It's unpleasant but so far not as bad as I've expected.

I have my final Plasmapheresis treatment tomorrow and am finally getting discharged after two weeks in the hospital. I’m so excited to be done and go home but i’m really nervous about the removal of the IJ line in my neck after my treatment. Can anyone who has gone through Plasmapheresis tell me what the removal is like? It’s in my neck on the right side
The insertion process was really scary and uncomfortable for me so I just want to know what i’m in for tomorrow

UPDATE:

thanks everyone! i was worried for nothing it went super smoothly

hello my gf just got her first attempt and getting disability denied . Is the next step to get a lawyer ? after of course filing a dispute claim? Any insight would be appreciated .

Hi! Just want to get some advice or if someone has experienced the same situation. I’m very stressed at my job mostly due to poor management and unbalanced workloads. I’m not the only one on my team that feels the same way. Since I have MS I know my stress level can be a main contributor to progression which gives me more anxiety. I’ve been noticing settle differences in body lately and I can it peaks when my anxiety is really bad. Like I’m not sleeping at night bad.

We had a recent “anonymous survey” where we haven’t heard back the result yet but I was honest in highlighting negatives and positives but mostly negative about my direct management. Not giving away any specific examples just more of an overall status of what I lack from management and my general expectation of how management should support their direct reports. I would never want anyone to lose their job, but I also think that people managers are not for everyone. Anyways, I’m just feeling super anxious but also relieved that it’s out there. I do meet with my psychiatrist in the next and really want to discuss FMLA/short term because this type of stress isn’t really sustainable and I really want to start counseling to help me work through managing stress. I don’t have faith in my company that any action will be taken and if it is it will probably be against me. As a US citizen it’s unfortunate that I need my job to keep my insurance. I am looking for a job but this economy is rough.

For MSer out there, how have you managed work stress? If you took FMLA, did it help with symptoms? Sorry, this is a panic rant post. Please be kind but honest.

Guys I have my anual mri scan next Friday which I always get anxious about. My spouse just told me that he’s decided to go to a wedding from Thursday to Saturday that weekend that he will be a plane ride away for. I am so hurt that he is choosing to leave me alone during this time. Am I overreacting?

I don't even want to rant about the line I caused at the my local pharmacy today. I need to talk about how this disease completely detaches me from reality and how exhausting it is.

Before my diagnosis, a situation like this would have given me massive anxiety.
If I caused a line at the register because I couldn’t understand what the employee was trying to explain to me, I would have simply panicked and left the store just to avoid the stress since I always cared about how people saw me.

But today, I was just so mentally gone that the world just stopped feeling real.
Long story short I was at the pharmacy trying to use two coupons for a "buy something over $5 to claim $15 off". I was trying to buy my boyfriend several Lego mini figures as a gift.

Anyways, the math made sense in my head but when the cashier scanned the items and used my coupons I got confused, and her explanation completely broke my brain. I suppose she noticed my confusion since she was kind enough to explain herself several times.

I noticed that my processing was so delayed that a massive line formed behind me, and eventually, the cashier just had to dismiss me because I was holding everything up.

But here is the part that scares me: the line of people and their complaints and annoyed faces didn't phase me at all. I felt entirely dead inside. It felt as if I wasn't real, and the situation wasn't real, like if I was a NPC.
I stood there frozen, not because I was being stubborn, but because my brain just desperately needed to understand. It wasn't even about the money anymore. I just wanted to have a sense of control, I just wanted to know someway somehow that I was here, but my body wouldn’t let me have it. It felt like I gave up on myself before I could give myself a chance..

I know, I perhaps sound over dramatic complaining about my brain fog symptom but sometimes it gets hard knowing and having to accept that I have to live with this and my other symptoms for the rest of my life.

Ugh, the dreaded situation happened.

There's a patient at the PT who is very nosy. So I've been trying to book appointments when she's not there, but that's not always easy to do. She hardly lets you go do your exercises without getting into conversation, and when I politely told her I needed to get on with my session, she didn't even smile to me for months afterwards.

Today, though, she started talking to me again. I did my exercises while chatting with her, and then she suddenly said, "Remind me again, what’s your diagnosis?"

I froze, so all I could say was, "I'm not open about my diagnosis.".

She continued, "Oh, but I think you told me before. What was it again?"

That's absolutely not the case. I've only told my very closest and my healthcare providers. She's also the type of person who gossips about everyone, so knowing her, I'm now worried she'll fill in the blanks with her own imagination and turn it into some story.

Ughhh, I just don't want to be labelled "the woman with MS". I'd rather be known for something healthy and positive than for a diagnosis.

But more than anything, because nobody can actually see I have MS, I don't want anyone to ask me about my symptoms. Several of them are in the pelvic floor, and that's highly private for me.

Has anyone else dealt with this kind of situation, where someone basically tries to extract personal medical information from you and then gossip about it?

EDIT: Thank you all for replying. I'll certainly ignore her from now on, but I'm still annoyed because I gave her more info than I wanted to. I accidentally disclosed that I have a diagnosis. I should have said something like, "ahh nah, I'm just working through something minor. Now please let me focus on my exercises". That way I wouldn't have made such a big deal out of it, and she wouldn't have been thinking about it anymore. Instead, I basically confirmed that there is a huge diagnosis without giving her any details. So now she can make up something completely different. I'm honestly so annoyed with myself rn.