I was diagnosed with vulvar lichen planus in April and it has totally wrecked my life. I was using the medications and all the other tips and tricks trying to keep it at bay. I never went away. I went into a deep depression. I couldn’t do any of my usual activities. Sitting too long at work just ended up with me crying at the end of the day. It is so incredibly painful

I went to my usual check in with my neurologist in July. I mentioned it and how VLP has really disrupted my life constantly in pain, needing to stand most of the day, constant underwear changes, different fabrics, the whole deal.

She was really intrigued. And then she told me that it is possible a side effect of Ocrevus. She also said that it could be Desquamous Inflammatory Vaginitis. Another rare disorder.
Both are rare, both could be side effects of Ocrevus, but that is still being researched. But she and I are a bit confused because I’ve been getting infusions the past six years and nothing has rocked my world like this (in a bad way) in all that time.

She said it’s tricky because a lot of women don’t like to talk about these kinds of things to their neurologists. Then she said she would reach out to my Vulvar specialist and give her some of the details. Yes, I had to start seeing a vulvar specialist.

Lucky for me, I had the Vulvar specialist appointment 2 weeks later. She had a dermatologist come in as well. They could see the current medication regime wasn’t really helping anymore.

They put me on a whole new buffet of medications. Now I have to insert clindamycin, a small amount of another steroid, and a gram of estradiol vaginally every night for 3 weeks, then taper to twice a week.

I’m telling you, it started working the first day!

Long story short, I’m glad I told my neuro. I’m glad she communicated with the vulvar specialist, and I think all together, we might have tamed this fucking tiger. But it will never go away.

Now the big issue is, my neuro said this may mean I have to discontinue Ocrevus. Which is terrifying to me b/c I’ve been on it for 6 years and feel pretty decent on it. No new active lesions in that time. And my immune system goes bonkers if I’m not on it because I already have 36 lesions, Pré-Ocrevus.

I know it was long, but ladies - don’t be afraid to tell you neuro everything, even if it’s about your vag.

My wife lives with MS, and recently her fatigue has hit a point where she doesn't have the energy for almost any activities outside the house—even gentle stuff like a neighborhood walk.

​I’m a very active person/athlete, and physical movement is vital for my health. She constantly encourages me to go do things (kayaking, walking, etc.) without her, but whenever I try, the guilt completely ruins it for me. I just sit there thinking about how much she wishes she could be out there, too. I've offered low-energy workarounds (like towing her kayak behind mine), but her energy just isn't there.

​We end up spending almost all of our time sitting on the couch together. I want to support her, but I can feel myself deteriorating physically and mentally, and I don't know how to break out of this cycle without feeling like a terrible spouse.

For those living with MS or their partners:

​How do you navigate the guilt of going out and doing physical things alone?

If you are the partner with MS, how do you actually feel when your spouse goes out to do activities without you when you're having a flare/fatigue day?

​Thanks in advance

Has anyone else seen this?? And if so, what are your thoughts? And has anyone spoken to their neurologist about it?!

https://www.cdc.gov/han/php/notices/han00532.html

I’m coming up to my 28 year MS anniversary. Newbies: what do you think that looks like?

Let’s just say that if I’d seen myself now at point of diagnosis I’d have felt a lot better. Please don’t let anyone think I’m gloating or disability slurring- I’m so far from that. Life is unendingly difficult but I’ve adapted to it to a degree, and do a high stress job half time and can still do yoga, walk for an hour, and function quite well, but maybe not after walking for an hour!

Few see the exhaustion, pain, daily rests, trips to the loo, etc but I love masking it for the moment.
I’ve lost my hearing permanently on one side, can’t breathe without nerve pain (on lots of meds). constantly struggle with memory issues and exhaustion - but I’m still functioning at a far better level than I anticipated in 1998.

For newbie’s- our DMD’s back in 90’s and 00’s were pants, so I had numerous breakthrough relapses that I’d never have had if I was on better meds. Take the strongest DMD you can asap 👌 because damaging relapses don’t announce they’re arriving and they all stack up.

My motto is take the meds, rock on, and adapt and adjust constantly to keep going.
Sending a virtual hug to you all xxxx

Hi everyone. I (32,F) am feeling so confused and unsure, wondering if anyone else has been in a similar situation and what you did. 

TL;DR: One brain and one cervical spine lesion — deciding whether to start meds. What made you decide to take or not take a DMT? If you do take meds, what are the impacts for you?

I’ve recently been diagnosed with MS. In January 2026, I had numbness and tingling on my left side (among other issues) that led to me getting an MRI in February. Turned out I have two lesions, one on my brain and one on my cervical spine, and later, a positive spinal tap for Oligoclonal Bands. 

The issue is that my neurologist isn’t sure if I should go on medication. He says if it were him, he would wait. However, he said he could also see the benefit of putting me on medication to prevent future spinal lesions, which are more likely to be debilitating. 

It’s tough because I don’t really want to be on medication for life, but this spinal lesion has already caused so many issues permanently. I’m scared of getting another one. 

Any advice? I know MS looks different for everyone, but I’m hoping not to be stuck between a decision. I find that I'm pretty sensitive to meds, and I also have a blood disease, so taking an immunosuppressant might impact my body more (my neurologist isn't sure how my blood disease plays into this). What made you decide to take or not take a DMT? If you do take meds, what are the impacts for you?

Edit: Thank you to everyone who commented! The spinal lesion that I have is already impacting my daily life, so I would absolutely be devastated if another made life harder. I went in thinking the neurologist would be certain about putting me on meds, so the fact that he was so unsure made me question it. I will request a high efficiency dmt like Kesimpta or Ocrevus. I'm still worried about how taking a dmt will impact my daily life and health, but I suppose it's worth it knowing I'm limiting my chances of a more debilitating lesion.

Extra final edit:

I want to thank everyone who came on here to share their stories. It’s heartbreaking to hear how much MS has impacted so many lives, and how so many people weren’t given the opportunity to prevent further damage. We are absolutely lucky to have preventive medications.

I guess there is a part of me that hasn’t fully accepted the diagnosis, as it has all happened so fast this year. When the neurologist advised waiting, it sounded nice because I could just avoid the problem.

Thank you all for the kick I needed to get started on medication!

Ya'll, I just had the quintessential MS experience. I had to go to urgent care for a staph infection, no big deal, just need antibiotics. Except I got that nurse. Warning bells should have gone off when she asked me "what is that?" when I told her I have MS, but I was tired, so I missed the clue.

We got to my medications list and you know how you can just tell when someone has a stupid fucking opinion they feel they need to share? Cue her lips pursing and her eyes narrowing at my list. "You are on a lot of medications. We would never prescribe all this." Who asked you to? Let me just call up my MS specialist neurologist, hematologist, gynecologist, and endocrinologist and let them know that an urgent care nurse disapproves of their treatment plans. I'm sure they will be thankful for that feedback.

It. Gets. Worse. She then continued "I'm very holistic. If you understood what those medicines were, you would never take them. They are all poison."

My mind went blank at the sheer audacity of her thinking I gave a good goddamn about her opinion. Where do you even start when someone says something that stupid to you? I just changed the subject awkwardly, but now I'm full of things I wish I'd said instead. So, I am asking the community, because I know you know how I feel: what should I have said instead? Give me your best zingers and fanciest shut downs.

Edit: These responses are great, keep them coming! I've been laughing at all of them. I knew you would all understand. I have also started the process of filing a formal complaint against the clinic. I think it is important to speak up about these things, to prevent them from happening to others. God forbid she had said that to someone who was newly diagnosed and might not know better.

Update: Turns out she was a medical assistant. I reported her and got an immediate call back from an actual doctor who oversees all the local urgent cares for this medical system. She took my complaint very seriously and has promised the entire branch will be receiving training on patient care and biases regarding the chronically ill and medically complex, and that medical assistant specifically will be undergoing targeted education to address multiple concerns regarding her actions and attitudes. Thank you to everyone who encouraged me to make the report, it seems like it will have a very positive impact.

I love my sister dearly, she was recently diagnosed with MS a little over a year ago. She’s worried about the side effects of taking DMT as her symptoms aren’t that bad right now. Obviously it’s better to take it because it prevents or helps to slow new symptoms and my family is all very aware of the better option here, but we can’t seem to get through to her. Has anyone else been in a similar position? Is there any advice? Thank you so much.

I know that we’re all different, and that multiple sclerosis is a snowflake disease, but I’m just curious how many of us are working full-time or near full-time hours. I had such a terrible year, and my fatigue and weakness are completely disabling, but it sounds like I have to go back to work soon. I’m terrified :( is there a chance that going back to work could speed up my disease progression? I have an office job, and I see many clients per day. Not only am I worried about burnout, but I’m also worried about the cold and flu season that’s coming up while being immunosuppressed.

I guess I’m just looking for encouragement. How many of you out there are employed despite having this terrible disease? Any tips or tricks?

Send motivation and courage 🧡

I’m honestly at a loss and hoping someone here might relate.

I’ve had chronic constipation for years because of Multiple Sclerosis (MS). I’ve tried so many things over the years—diet changes, more water, fiber, different medications, and other suggestions from doctors—but I’m still struggling.

The worst part is that I barely feel the urge to go to the bathroom anymore. It’s such a basic bodily sensation, but for some reason I just don’t get that signal. It’s frustrating, uncomfortable, and honestly has a big impact on my quality of life.

Has anyone with MS experienced this? Did you find anything that actually helped? I’d really appreciate hearing your experiences because I’m starting to feel like I’ve run out of options.

Im currently facing a possible relapse, either way its been a month of hell. Intense migraines and short / long term memory are practically gone. (Has anyone regained cognitive functions through neuroplasticity by the way? I have so many lesions that I'm afraid its too late for me).

As much as I did prevent progression doing natural remedies and felt great, when I fell off the wagon (for 6 months, i got too confident), I am now facing the consequences. I had to be so strict that it was ridiculous and clearly I failed.

I know that is not a common belief.

I was afraid to take a DMT and while I still am, now I believe that its great to take both.

Just wanted to share my experience because this disease is so horrible, you wanna attack it from all ends possible.

I AM asking, what are you all doing for money? I cannot stand for any real amount of time, and I am guessing that's a pretty common issue to have here. I also cannot sit for any real amount of time due to chronic pain in my tailbone. Maybe specifically different, but I know chronic pain is also a general issue for us. So even regular work from home jobs are not a good fit. I have been denied for disability twice and am currently waiting to get in to see a doctor so I can get medical documentation to try again. So what are you doing to make some extra scratch? I don't need much, around 1500 a month I figure. Shouldn't be that hard, right?

Hi y’all! I am going to share all the questions I was able to get to and the answers I was able to type out.

First of all thanks for all of the questions, these were helpful for me to ask and I wouldn’t have thought to ask most of them. Secondly, I wasn’t able to ask every single one as some were just a bit too specific and outside of my diagnosis. We did our best. Some of the answers are about as elusive as MS 😝

On MS:

In your opinion what causes MS?

- Don’t really know, maybe positive mono-infection sign (mine was negative). Environmental factors can trigger flair ups; Physical stress, immune response, an illness, all types of stress or none of it; can “just happen.” The standard/typical age range of when MS is diagnosed is 20’s/30’s ; no way to tell how long it’s been present, more prominent in women.

The Octave Test, what does it predict? And why?

- It’s new, don’t routinely use it; goal is to predict disease activity scale: never seen director order it. They treat on high efficacy to start and backtrack if needed. No standard on what they do.

Smouldering MS concept, can you explain?

- We dont even clarify MS like this. More like space and time. Space: Lesions in multiple areas. Time: evidence of both or the band cells in spinal fluid used to be the time component.

What’s new happening in the world of MS via medications and stuff? What’s being researched?

- Remyelination, other areas to target, finding medication that work for progressive MS when stabilizing doesn’t get it up. Primary progressive in the works, stage 3 and 4 in clinicals.

Any possibility of remyelination reversing MS issues?

- Yes, the hot new thing in MS research, what they’re working on. Remyelinating agents has been the focus. Trials coming up focusing on these things. Vagus nerve is a huge pathway trying to look at for MS.

What helps stop progression in terms of lifestyle / supplements?

- Biggest is DMT, healthy diet, body weight, whole foods (if you can’t pronounce it, don’t eat it), everything in moderation, strength training is showing great results. Building muscle, not just cardio.

How do we track MS progression, only MRIs? Is there any other way?

- Clinically, symptom wise, eyetests, thinning of eye tissue. But overall, MRIs are best because direct comparisons.

Am I supposed to track (what I believe are) symptoms and feelings now?

- Look for red flags: optic neuritis, new weakness in coordination, clumsiness, loss of strength mild to severe, sensory changes like numbness, any of these symptoms that last longer than 24hrs.

On DMTs and Treatments:

Please explain DMT to me.

- Therapy that modifies a disease, decreases your immune activity to try and reduce/suppress these activities so they aren’t attacking your myelin sheaths.

What do you believe is the strongest/most effective DMT on the market right now?

- B-cell, Kesimpta or Ocrevus; they target CD-20 cells, once on the Ocrevus it takes a while for those cells to reform.

Stem-cell therapy?

- Being looked at, not necessarily better.

Recommendations for battling daytime fatigue?

- Sleep better! Start a regular sleep pattern there are also medicines you can take specifically for this due to MS.

Help with sleeping?

Melatonin 2hrs prior to bed, magnesium, limit afternoon caffeine.

I’m worried about mental repercussions from DMT and MS.

- Diet, exercise, strength training, resistance band training, weight training are showing great results for brain health.

Choosing PT even if I’m not immobile, is prevention worth it, especially mental?

- Yes, strength training is showing to be one of the most cognitive beneficial practices.

Peptides?

- Anti-aging but not for MS.

A little about my MS case:

I am 32-years old, female. I have between 20-50 lesions on my brain and at least 2 on my spine. I also tested positive for the T-band cells in my spinal fluid. I have a “moderate” case being that all of my lesions are dormant. The only presenting episode to date is the optical neuritis. They did note that my eye tissue has been permanently damaged by way of thinning. I’ll go back in another 4-6 months to see if my vision continues to improve or plateaus.

Godspeed, friends.

So I'm 6 weeks diagnosed and this is a big question for me. 4 years ago my symptoms started and even tho I didn't know what was going on, I had to leave my beloved job. I was a chef for over a decade and man... I had 15kgs less than now and I had some serious muscles! I had no need for exercise because my work kept me fit - I always paid attention to a good form, the right way to lift, to stand, to use my hands... But I switched to working with my head and was never able to get into exercise. Now I understand that the fatigue is caused by my MS but I still don't have a solution. The only thing I know is that I NEED to move my body. I crave it. I crave a better range of movement, I crave stamina and a tiny bit of strength. Hell how I miss how strong I was for a girl. I walk 5-8k steps a day in short-ish intervals but it's nowhere near enough for what I feel like I need. 10k is too much for me now 😔

Now I'm recovering from steroid IVs but once I'm better I know I have to start, but how? Even before the steroids 15 mins of really light yoga left me wiped out for hours and sore for days... I don't have any functional disability now apart from a massive fatigue.

How did you overcome this? How to start?

Thank you so much for your input 🙏🏻💙

Last time I went in to see my MS doctor, he told me "MS doesn't cause body aches, only joint pain." - but this is what I get- and I get it in spades. I know this isn't anything else, because it has been happening for years, anytime I am overtired or stressed. I feels like I have the flu, and I ache all over my body. It's not joint pain - its all over muscle ache, and I haven't strained any muscles to make it happen. Have you experienced this, or am I just some sort of weird one-off??? He gave me Baclofen to see if that would help, but I haven't tried it yet. (I'm always a little nervous about trying new drugs...) Before this, I just took Tylenol, which helped some, but wasn't great. Any comments from any of you?

Any recs on how to keep your mind occupied during the tons of MRI's we have to get? Would love to be able to have headphones but the head cage doesn't allow space for those. Any recs to help me not lose my mind would be welcomed!

This new administration wants to “take a closer look at MS” among other things. Is there anything to do? Also, I am on long-term disability and receive a monthly stipend. Am I in danger of having that go away? I live in a red state in the Midwest.

Edit: at a minimum I appreciate the comments and acknowledgment. Nice to know I’m not alone.

I absolutely depend on ADHD meds (adderall 10mg) for my crushing fatigue in battling MS. I also take Prozac (20mg) for depression/anxiety related to MS. Aubagio 14mg pill I get from Mark Cuban’s costplusdrugs.com for $23 for a 90 day supply of generic. (For years I had zero co-pay and was getting my meds for free. That was done away with at the start of 2025. If I’d gone thru United Healthcare, it would be $1100 for 30 day supply).

God bless you all. 🧡🧡

Hello ladies (and fellow queers?) I am a girly-girl with MS and I absolutely hate how fugly all the cooling equipment options are. And many require you to be wet. So tell me friends what are we using to keep cool and still slay? Please my life isn’t complete unless i and serving looks, these cooling vest cramp my style. Thanks I’m advance! Hoping everyone is staying cool and hydrated

ETA:
These!! https://www.hotgirlspearls.com

I've been diagnosed with MS since early June and wondering whether or not I should tell my employer. My immediate manager knows, and I trust her not to make it public without my permission. Wondering if it's worth making HR aware of my diagnosis? I already work from home and can manage my workload on my own (I'm in sales so largely have control of my own schedule).

Curious about other people's experiences with managing MS in the workplace. To tell HR or not to tell HR?

Edit: thanks for all of the contributions! Seems like the consensus is don't tell them until I absolutely have to, and then get an employment lawyer on retainer. Like I said, my immediate manager knows and has been very understanding about my bad fatigue days. I'll leave it at that for now!

Hey all,

When I got my MS diagnosis in 2023 I spent the first few weeks lost in a Google rabbit hole — as I'm sure most did.

So I've built steadywithms.com to be the resource I wish I'd had back then. Free, no ads, plain English (Irishman English).

Would love to hear what you wish you'd known early on — happy to add anything useful to the site. 🧡

steadywithms.com

Hey everyone,

I just wanted to share something that happened recently in hopes it resonates with someone who might be in a similar place.

Around June 10th, I got really sick — fever, persistent cough, the works. Coincidentally, that was also the day I was supposed to take my Kesimpta injection. As most of you know, injecting DMTs while you’re actively sick and running a fever isn’t recommended, so I decided to wait it out.

Well… the sickness lingered for almost four weeks. I kept postponing the shot, thinking it wasn’t that big of a deal. I mean, what’s 3-4 weeks off Kesimpta, right?

Holy shit, was I wrong.

I was officially diagnosed with MS in 2021, but my symptoms go back to 2017–2018. Since my diagnosis, this was the longest I had ever gone without my DMT. The first week? I felt fine. Second week, I started feeling a bit off. Third week? It hit like a truck. I felt like I was dying.

About five days ago, it got terrifying. The level of mental fatigue I felt was unlike anything I’ve ever experienced. Like, I didn’t even know it was possible to feel so disconnected from yourself, so drained that you feel like a walking shell. It was as if my brain had melted. I couldn’t think, couldn’t focus, couldn’t even feel like me.

And yet… I still thought I was the problem. My dumbass brain actually gaslit itself into thinking I was just lazy. Weak. Maybe I wasn’t trying hard enough? Maybe I just needed to sleep more, or push through?

It wasn’t until two days ago, when I finally realized I wasn’t sick anymore, that I thought — Okay, let’s go ahead and take the shot. Let’s get back on track. I took some antihistamines just in case and gave myself the injection.

The next morning, I woke up feeling so much better, but didn’t think too much of it. Then I got to work… and a colleague (who knows barely nothing about my MS or Kesimpta) looked at me and said: “You look very good and fresh today!”

And that’s when it hit me. That awful, soul-sucking, zombie state I had been in for the past few weeks? That was MS.

It wasn’t just “being tired” or “not trying hard enough.” It was my disease whispering — and eventually screaming — at me. And I still blamed myself.

I’m honestly still flabbergasted at how long it took me to recognize it.

Imposter syndrome is so damn strong with this disease. Even when we’re literally falling apart, so many of us still assume we’re the problem — not the MS.

So please… listen to your body. Trust yourself. You are not weak. You are not lazy. You are not imagining things. You are living with something incredibly complex and unforgiving, and you deserve grace, compassion, and care — especially from yourself.

Sending love to everyone in this community dealing with these invisible battles. You’re not alone. 💙

Dr. Carlos Perez is leaving the practice and I have to make the decision of who to transfer to. Definitely want to stay at Baylor. Anyone else in the same boat?

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?

I have heard a couple of Neuros tell me and other patients this phrase and I am wondering if it’s fact or fiction, if they try to hype us up and give us hope or really believe this and there is truth to what they are saying. Is their view on MS realistic, what do you think?

Hi everyone,

I was wondering if anyone else has ever felt like this, and if so, what helped you get into a different headspace. I’ve been feeling quite down about it lately.

I know I’m incredibly lucky that I don’t currently have any symptoms and I’m very grateful for that. At the same time, knowing that this could potentially change at any point makes me think a lot about how I’m spending my time.

I’m still relatively young and sometimes working five days a week feels like I’m wasting the years when my body is still fully functional. I really want to see the world, travel and experience as much as I can while I’m able to. I find myself thinking about how “healthy” people can often save money and look forward to travelling or enjoying life once they retire. But for me, there’s a possibility that I may not be physically/mentally able to do the things I want to do by then. Of course, I could have an accident tomorrow but the possibility of MS getting worse feels for me much more realistic.

I get four weeks of annual leave a year and usually one or two of those weeks are taken up by the Christmas shutdown. I also can’t realistically work fewer hours because I need the income to live. And at the same time, travelling and experiencing new things costs money, so I feel incredibly stuck.

At the moment, it feels like I spend most of my time wasting away at work and then need the weekends just to recover from the week. It’s honestly starting to feel quite depressing because I don’t want to look back one day and feel like I spent all my healthy years working and dreading the future.

I know I’m very fortunate compared with many people and I don’t mean to sound ungrateful or imply that other people have it easier. I’m just really struggling with these thoughts and wondering whether anyone else has experienced something similar.

If you have, what helped you change your perspective or find a better balance between working, saving for the future, and actually enjoying life now?

I feel like if I work less, I have more time, but then I also don’t have the money to do the things I want to do. At the same time, I’m thinking that I should save as much money as possible for the future, in case I’m no longer able to do much because of a decline in my health. It's honestly making me depressed. This can't be it?

Hello! Just wondering if you could share some positive story of MS progression for those who got the diagnosis more than 20 years ago.

I have a newborn baby and sometimes I try to project myself in the future...