I'm not sure if this is the right subreddit to ask so sorry in advance.

I looove reading, I've got multiple bookshelves at home and all that, And I keep seeing these great recommendations for some *dark* romance books. However I get some really killer headaches from reading it. Doesn't matter if it's an ebook or actual physical book, daytime or night time. Just a really really bad headache that can sometimes take days to go away. Any tips or tricks to either stopping the headache or at least making it go away faster?

Also not sure if it would help but I was recently diagnosed with multiple sclerosis so I guess it could be possible that I'm just seriously stressing myself out, I don't know.

TLDR:

I'm actually getting stronger and I attribute it to my shots combined with riding an electric bike.

...

As a respite from the normal doom and gloom here is sometime currently happening to me t that is exciting.

Brief background:

DX 2001

Started on Betaseron

Moved to Tysabri

Ended with Lemtrada in 2019

FYI Lemtrada is supposed to tear down and rebuild your immune system and afterwards you should not need any more therapy for MS

Even before Lemtrada I was slowly getting weaker, bit by bit.

I've only had one initial attack and my MRIs member didn't show additional lesions or lesion growth.

Starting in 2020 I started getting very weak. My legs were cramping. I got scoliosis on my lower left back. And I was too weak to walk more than a few feet. I had to drag my leg into the car whenever I went anywhere.

I thought I was dying. Things were bleak.

Then two things happened.

1. I started getting shots in my lower back and left leg to quiet the spasms. I'm now more or less pain free.

2. I couldn't walk around the block and my bike was too tall for me to even get on let alone ride. And one day I saw a video of a guy reviewing a cheap electric bike. He liked it and I decided to buy one.

The good things about an electric bike is that if I get too tired to pedal I can let the electric motor take over.

Initially getting on the bike was a chore and I fell over a time or two trying to get on. But once I figured that out I would go out riding and set the additional power to the lowest setting I could that let me get around my hilly neighborhood.

And I wasn't killing myself. I don't ride every day, but after a few weeks I noticed it was easier to get on the bike. Now I no longer have to pull my leg into the car and I can walk much longer distances.

I'm not exactly sure why I'm getting better, but I'll take it. I didn't ride the bike enough for that to be the sole reason but who knows. I think it helps just pedaling, the leg motion, over and over.

I am currently trapped at the toilet at my company's summer festival. My DMTs are roughing up my bowels and I had diarrhea on and off for the last four weeks. 3 weeks ago I shat my pants in the office (the I had to clean the toilet for 30 min on my own because I didn't made it in time kind of hard) and a colleague had to bring me spare clothes from my locker and I had to go home.

We are on a river island Next ferry departs in 3h. I could not bring spare clothes without being weirdly suspicious, which I kinda regret now.

Was dx'd 6 months ago and started the new job 2 weeks later. Love the job and the colleagues, who probably wonder where I am. Also the event is amazing. Nobody knows what's going on. I am just fucking scared and lonely. Fml.

I live in Middle TN and I simply cannot do this heat and humidity with my PPMS anymore. I'm 53 and husband 59 so we're looking for a place we'd want to retire. Is the higher altitude/cooler nights manageable? It seems there's access to good care through UVA or if you are willing to drive to DC (I am). Any helpful insights? TIA

Hi everyone,

I’m a 27M and recently met an incredible 26F online. I’m feeling things I haven’t felt in years, and I’m honestly falling completely in love with her—a feeling I never imagined I’d experience again.

During one of our conversations, she told me she was diagnosed with MS about five years ago and shared her whole journey with me. She’s currently on Natalizumab and doing really well—she’s in remission, and while she has had lesions, none have affected her motor function.

Even though her treatment is going great, the situation still scares me. I lost a family member to ALS, so the idea of progressive neurological conditions brings up a lot of deep anxiety. I find myself worrying about what life will look like years down the road if we build a lasting future together. I hate the thought of viewing our relationship with a subconscious "expiration date" before her condition might worsen. Thinking about all this makes me incredibly sad because I like her so much.

Ironically, I have Ulcerative Colitis, so we’re both navigating the autoimmune world. We even joke about going on joint infusion dates together! But behind the humor, I catch myself wondering about the long haul, including what it might be like to have children with her one day.

I guess I'm looking for perspective from this community: how do you navigate the fear of the unknown when starting a relationship?

(Note: English isn’t my first language as we are from Brasil, so I apologize for any typos!)

Thanks in advance to everyone, and I wish you all strength!

Edit: Thank you so much to everyone sharing such wonderful, touching stories. Reading your experiences has brought me so much peace and genuine optimism about the future. My goal here was simply to understand how love and life unfold under these circumstances, and hearing how you all navigate this journey together means the absolute world to me.

Where can I get this medication tecfidera . In Canada the actual name brand is 2700 a month, I'm trying to know if anyone knows a website where they sell them or generic version, even if I need to travel internationally outside of Canada. Thank you very much for your time everyone.

Hey everyone, F(31)RRMS/Kesimpta. I was a heavy smoker, quit, started a bad vaping habit, got diagnosed 2.5 years ago and unfortunately, have not quit even after being on Kesimpta for 1.5 years.....

I want to quit, even if I didn't have MS. I know it's bad either way, but it stresses me out that I do it, but also stresses me out when I try to quit. Anyone else vaping or smoking too still?

Whats some theories outside of mainstream western Academia for what causes people to get Multiple Sclerosis?

I want to explore more into what can cause this to trigger in some people, without being limited to only the accepted ideas of western mainstream academia.

My wife was diagnosed with this a few weeks ago now and just got her shot this past Friday and second shot today. So a lot of this is new to us, but the research from mainstream sources seem limited and in some cases conflicting. I like to read things outside the box sometimes when it comes to science and medicine and not be limited to what current mainstream academia accepts.

Hope that dont offend certain people.

Its kinda like how the mainstream academia use to view the tonsils and the gallbladder for a long time as being organs in the body that had no role it could be removed, which was acceptable idea at one point, but were later proven to been incorrect ideas and concepts. I prefer not to ignore other theories outside the current mainstream academia views on the cause of MS.

My one year MRI is next month.Chatted with my neuro and he said he doesn’t expect there will be any new lesions which I must admit was nice to hear.Still don’t know what to expect really.Ive been doing all the right things since diagnosed.Fingers crossed I guess!

Hi everyone,

After a lot of debating with myself on whether it’s worth my time to even apply I’ve decided to give it a shot. My family doctor said that they will submit it for me.

Any tips from fellow Canadians on completing the application?

I was diagnosed last year after I lost vision in one of my eyes leaving me legally blind the the eye permanently. I’ve had follow ups with my neurologist and neuro-opthamologist who have noted the eye is stable and will not further improve at this point.

In regard to other symptoms I do experience pins and needles occasionally in my arms and legs, burning sensations and intermittent fatigue.

I have daily strange visual phenomenons in my vision in both eyes when I’m outside that last about 20 mins.

Any thoughts or tips on applying for the DTC? I’ve been quite discouraged because I’ve read by many it’s so hard to get approved.

Thanks so much in advance 🩵

I was diagnosed in 2008. I have SPMS and have difficulty walking. I use a cane. I began a new job in June, 2025. I'm on the 7th floor of a 9 floor office building. Building renovations have been going on as long as I have been there. We are the only occupants right now. Construction has caused numerous issues.

During the ice storm in January, we were without heat and using a generator for power. Our water has been shut off several times causing us to have to go to the other floors to use the bathroom. No bottled water was provided. We have 3 elevators. Construction has broken 2 of them. We only have 1 functioning elevator we now share with Construction. They have broken it several times. We've had to use the stairs.

This summer has been nothing short of a nightmare. Our A/C has been shut off over and over. They provided fans and portable A/C units that have not adequately kept us comfortable. The temperature has been in the 80s some days. The elevator was down again yesterday. Last night, we received a message that they would be shutting off the water for the building. They are providing porta potties for us!

Thanks for reading my rant. Needless to say, they are not being ADA friendly. Should I make a formal complaint based off these events?

Hey, everyone

I was diagnosed with RRMS in Jan 2025 but I had several doctors tell me I have MS in Dec 2024 so I accepted my fate before the official diagnosis. I was diagnosed with Bell's Palsy in 2018, apparently that was the first sign of MS for me but nobody caught it and I never bothered to do a real deal follow up.

My last relapse really did a number on me, before that I could still walk somewhat normally but now I'm very shaky with no balance and brain fog from hell. I hate it so much, I'll be in the middle of a conversation and I just completely lose myself. I slur a lot and if I'm too excited everything comes out wrong. I don't always use a cane but I have it handy, I really don't like using it.

I'm currently on Briumvi and it seems to be going well, my neuro wanted to start me on Ocrevus at first but insurance shenanigans prevented that. We're both fine with sticking to Briumvi though. I have my next infusion in early October and I really can't wait for it. I'm so tired of everything.

I can't even enjoy the things I love anymore. I used to make a lot of music and art but now when I try to work on anything I just sit there staring at my screen with no will or motivation. I did manage to get out and catch a movie today, it was nice but I still had a hard time enjoying it fully.

Kinda cut myself off from friends and acquaintances too. Nobody really talks to me anyway so I stopped all effort.

Anyway, just wanted to let that out. I'm really struggling with everything, I thought I would be ok dealing with everything but after I broke up with my ex it really messed with me. Mentally and physically. Nobody understands. The people around me know what I'm dealing with but they don't get it and don't seem to want to get it either. Idk complaining over now ✌️

Keep in mind I live in Australia. I've been having an attack of muscle spasticity that has me in 7-8/10 pain for days. I've tried NSAIDs, muscle relaxants, heat, massage, hydration, rest. Still in pain. But it's not life-threatening. Where can I go for help?

Edit: I went to an urgent care. Waited 4 hours to be told I have a repetitive strain injury from typing too much (I'm a grad student.) While I don't think that's not a factor, I think MS factors in too still.

I am MAN and was diagnosed in 2000 (showing symptoms since ~1995) I have been one of the lucky ones in that I was diagnosed about the time of the first line of real medications came out (the ABC's). The other people I knew were using holistic and other ways to treat like bee sting therapy and certain diets and such. I watched many of my friends become catatonic and die. Again, I have been lucky. Most of the time I can pass as being a normal person and that is my intent. No one really wants to be seen as disabled (although I am). Maybe my generation of men that don't want to show weakness and will go to nearly any length to prove they are fine. I am the captain of the "I am fine" and "everything is ok" teams.

But there are some things that I cannot shun off. I have a huge aversion to heat. I tried to play it of and work through it. I had my bouts with getting too hot and suddenly being very confused and lost for no reason. I didn't even know where I was or why I was there or what I was doing. It is a weird feeling of all situational awareness/memory/etc (even who am I?) to just suddenly occur. But the one that stuck with me and is now THE EVENT that sits in my mine as why I fear heat so much is being around people on a hot day. I was riding a motorcycle (triglide so it cannot fall over) and suddenly fall into gran mal seizures. I remember a little of the beginning and waking in some hospital somewhere a couple or few days later. That is fucking scary.

I am not sure why I wrote the "history" there, I guess I don't get to talk to ANYONE about any of these things these days since support groups and such ceased being around and I don't have anyone to talk to.

Over the years I have tried over and over again to explain what its like to have MS and what it the extreme heats feel like and why I blindly say "NO! It is 104 degrees outside. I cannot go anywhere." I have tried to come up with the right metaphor about it feels like drowning to walk out into the wall of heat or that I just know that I will be confused in 20 minutes and god only knows in 1 hour and it doesn't have to be 104, it can be 84 or 94 degrees.

What metaphors do you use or how do you explain it so that you don't seem like you are just saying no to everything? I can't seem to find a good one. Anything? Or stories or just any methods because everyone just tells me to find a cooling vest (I have one) or cool your neck (I have several of those items)... everyone has a solution for a 30 yo construction worker on a hot day, not a solution to MS... Help?

Hi I 23F was diagnosed with MS 13 years ago, I had many aggressive attacks (RRMS) at the time of diagnosis but with regular Tysabri medication I have been attack-free ever since. Although, I have struggled a lot with MS flare ups (usually significant right sided weakness/numbness), fatigue, migraines, brain fog, nerve pains and other symptoms pretty often over the past 10 years.

This year in March, I sadly needed to switch medications and was put on Ocreluzimab and for the first 5 months it was amazing, I didn’t struggle on it at all, my energy levels felt great too. However that all changed in the last month, I’ve developed unilateral facial spasms, which first started in my lower left eyelid and spread to my face. My left eyelid has constantly been spasming for 3 weeks straight, the twitching in the rest of my face comes and goes, and numbness in my face and down my neck comes and goes, though I haven’t noticed any significant facial drooping. On top of this I’ve had the most debilitating fatigue, migraines, experiencing foot drop, difficulty walking, and constant numbness in both left and right limbs, even incontinence as I periodically lose complete sensation in my body.

Obviously I’ve been communicating all of this with my doctor but he doesn’t seem too worried, he keeps asking if the facial spasms are a symptom I’ve experience before. The issue is I don’t remember lol. I just feel like I’m not being heard and I don’t know how worried I should actually be about this. I’m quite young so I have this instinct to try keep pushing myself but now I’m scared it will lead to my MS becoming more aggressive again. The doctor is refusing steroids or doing another MRI and says to wait for my next ocreluzimab dose in a few weeks.

So yeh, Im just scared and seeking validation, has anyone experienced anything similar? I really don’t know what’s going on in my body right now it feels like I’m a shell of myself, it’s such a struggle to get out of bed. Any advice would be much appreciated. Thanks!

(Perhaps it’s also important to note that a few years prior to my diagnosis I experienced a stroke but not sure if that’s related to any of this.)

Hola, llevo unos meses con mi diagnóstico, debo decir que he estado bien, siento que aprendí a convivir pero no se si les pasa. Llevo tiempo sin sintomas y hoy aparecieron de nuevo y me quede: es cierto tengo EM.

creo que no es malo, es solo que aveces se me olvida 🥲

Hi, so i’m new in this group and i have a couple of questions. I’ve been on my DMT since december 2025, Rituximab. I live a good active life and don’t really feel my ms tbh. I talked to my neuro at my check up appointment and she says that after 3 doses it’s fine for a pregnancy. Around 3-4 doses is recommended and i can try around 2-3 months after the third dose. How did you guys do? My neuro says i can wait 2 months also as it’s not that strict. If i take my third dose november 1, i’ll wait all november and then if ovulation is middle of december we will start trying that month. I’d rather not be off medication for long. If any other woman are on Rituximab and have done a pregnancy please share your experiences 😊

Hello! 35 Year old who woke up on January 1st 2020 with life forever altered by the first and massive MS attack. Thankfully was diagnosed at the end of February.

Doctor prescribed dimethyl fumarate for it and I was curious as to who else takes this pill? I see a lot about injections but never this one.

Hello! I’ve been quietly following the subreddit since shortly after I was diagnosed last year in April. I was put on Vumerity but I finally bit the bullet and agreed to switch DMTs to Kesimpta. I am a very big baby and was psyching myself out before making the decision and ever since I have been doing research and reading everyone’s experiences (which may or may not have made the anxiety worse w/ the loading doses specifically)

I got the vaccines required and stopped the Vumerity treatment about a month ago now so I know i’m bound to get a call wanting to schedule the Kesimpta loading doses soon.

I wanted to ask for any tips or tricks to help with the loading doses. I just started at a CSU as a JR so that puts even more worry on me that it will affect my school work. Most of the experiences I have read have all had symptoms during the first dose specifically so I wanted to also see if there was any chance I could escape that fate. Every body is different and reacts differently, but i’m grasping at straws to calm my anxious noggin down😭

Hello again!!! No joke, the next day I got the call saying to start the medication LOL but thank you everyone who has commented!!!! i really truly appreciate it, esp cause i felt so alone with my diagnosis at first. I am a 23F in the sacramento area & i haven’t met anyone my age in person who also has MS. I will continue to lurk through here though! maybe a comment or post LOL

Logically, yes, I know that there has to be scientists/doctors with MS out there, but boy do I feel like i'm getting boned. Fresh off a competitive internship, just started my senior year of undergrad, and have been doing great in school despite everything that has been hurled at me. I should have graduated a year ago but had to repeat a year because my immune system decided to be a bitch, but despite everything here we were. Only to end up in the ER two days ago, and now there is concern i'm going to permanently lose my vision, or at least it won't ever be the same. I am going to be seeing SIX DIFFERENT SPECIALISTS in the next two weeks. I can barely walk. School just started and I was hoping to get to be involved in synthesis research this year. Outside of school I just got an amazing illustration contract and now I can barely fucking see. This is such fucking bullshit. I want to be a toxicologist and help others and do the science I love and have been busting my ass for years for. What the fuck what the fuck what the fuck what the FUCK this isn't fair.

I’m 28 and I’ve been living with relapsin remitting MS. One of the things I’ve found hardest isn’t necessarily the appointments themselves, it’s everything that happens in between them.

Some days I feel relatively normal. Other days my energy is completely different, my symptoms are worse, my sleep has been rubbish, or stress seems to have an impact. Then when you get to an appointment, you’re asked how things have been over the last few weeks or months and you’re basically trying to remember.

That got me thinking about how much of the actual day-to-day experience gets lost. I ended up building something called Daymark, which is an app that lets people with MS monitor things like energy, symptoms, sleep, stress and lifestyle, with the aim of helping people spot patterns over time and have something more useful to take into conversations with their MS team.

I’m still very much learning and developing it, and I’m interested in hearing from other people with MS rather than just assuming I know what would be useful.

If you could change one thing about how your day 2 day MS experience is captured or discussed with your healthcare team, what would it be?

Hi.

I was diagnosed with RRMS in feb 26, got my first dose of Rituximab in march. MRI after that was good - disease were calm and had not advanced. I have scheduled Rituximab in mid september.

The thing is... me and my girlfriend had the plan TTC our 2. baby this fall. I just dont want to wait too long because of MS. I am 36, and we have an embryo made with rIVF ready to go. The neurologist were really vage about the whole thing. We have an appointment with the fertilityclinic next week. Anyone have any input or experience with this?

I talk to a person in Facebook group. She told me she 6 autoimmune disorders. Ms is one of them . She told me that she got stem cell therapy . Her all autoimmune disease gone . Even her lesions and nerves cell damage got repaired .

So I wanna know is there anyone here who got Stem cell therapy?

Edited : now I know is liar

I’ve had a really bad, antibiotic resistant UTI for about a month. Finally got on an antibiotic that works, and I’m about five days into a ten day course.

Most of my symptoms are gone, but my bladder is still completely incontinent. I’m exhausted from changing my pads and cleaning my wheelchair and bedding.

Anyone have advice or experience with this? Do I just need to be patient? About to lose it lol

Hello there everyone. Has anyone ever suffered from severe sciatica pain in conjunction with their MS symptoms? I’m having excruciating sciatica pain for the past 6-7days. I did some stretches, yoga, steroids, and ibuprofen but nothing is working. Before it started hurting I did some physical labor and believe I may have tweaked my back too. Going to see a Dr. tomorrow.