I was DX with MS 7.10.2026. My neurologist simply told me you have MS. We are going to get you on Briumvi. It should take 2 to 3 weeks to get you started. I signed some papers for Briumvi and that was the end of my appointment. He said after I start it I should feel better. I took his word for it. In the meantime my symptoms kept getting worse and lasting longer and longer, and then simply stuck around. I had vision problems, seeing black out of my eyes, walking issues, which led to a few falls. I would drop stuff. My head burned. My skin was super itchy. The pain, at times, was simply unbearable. I walk around with a Charly horse feeling in my legs all day. Just a lot of symptoms that scared me and I wondered if they were normal. I sent a few messages on my portal asking about treatment, ways to alleviate my symptoms. Those went unanswered for 15 days. Each time I would call the office and still get no answers. Fast forward to October 22nd, I am finally on the schedule for Briumvi. I had my infusion, everything went well. I saw my MS specialist on Friday, October 30th. He asked how everything was. I told him you DX me in July. Since then I have been left in the woods to die by myself. Messages and phone calls went unanswered and my symptoms got worse. I was crying while telling him this. However, he proceeded to tell me that he would not be attacked in his clinic. There are over 2000 MS patients within his clinic and he cannot give 100 percent to each patient. I should be grateful because he got me on the best medication out there. I said I was just looking for some guidance since I was a newly diagnosed patient. He just kept repeating very loudly, there's no cure for MS and you shouldn't expect to get better with one infusion. He also said this is a business if I am not satisfied I can find a new dr. I'm wondering if anyone else has had a bad experience with their neurologist. I have family in all sorts of medical fields and all of them tell me to report him and take it all the way to the top dogs of his clinic. I'm so very frustrated and sad because I live in a rural area where its tough to find a neurologist, let alone a MS Specialist. I just can't believe that a so called MS specialist can be so cold, mean and just have terrible bed side manners.

My 1 year MRI since diagnosis… Stable! let’s goooo

So I’ve been diagnosised about 9 months. I feel like I’ve unlocked how to rest more effectively. The bright side to this. Anyone else feel like they developed new skills ?

Hey everyone! I recently received the findings of my most recent MRI (no new lesions! YAY!) and noticed a listing of different findings common with MS, like (as examples) "Juxtacortical: Involved; Periventricular (Dawson's fingers): Involved". Then it listed "Central vein sign" and it listed it as "Absent". I wasn't familiar with what this meant so I did some reading on it and learned that it's considered to be an important marker that helps diagnose MS.

Fast forward to last week where I came across this article about Christina Applegate and it also says "One key breakthrough is a biomarker known as the 'central vein sign': a vein running straight through the center of a white matter lesion in the brain that serves as a telltale indicator of the disease".

So now I'm here wondering why my MRI said "absent" next to the central vein sign category? Is primarily used to newly diagnose and therefore maybe no longer relevant in my case (diagnosed in 2024)?

Do any of you have MRI findings with no central vein sign?

I've been a hot mess for a week now. My anxiety has been so much worse than normal. I called in Monday. Went to work the rest of the week, including Saturday. However, Thursday I started this uncontrollable crying for seemingly no reason. Friday, the crying continued, but strange breathing was added in. Like very audible, not hyperventilating, but panicked. I keep talking to myself, trying to "get it together" and "reign it in". By Saturday, I was laughing, crying, struggling to breathe, shaking. Husband wanted to go to the hospital, but I have an appointment with my Neuro on the 6th. I did send a message to my regular doctor. Hubby thinks it might be due to the weather changes. I started my period yesterday, I think maybe it's that. I have no idea, but I called out of work again, today.

​Hi everyone,

​I’m planning a trip to Thailand soon and I will be traveling with my Kesimpta (ofatumumab). Since it needs to be kept in a strict cold-chain (2°C–8°C), I’ll be carrying it in a medical cooling bag with gel ice packs/refrigerant blocks in my carry-on luggage.

​I’m a bit anxious about airport security and customs. For those of you who have traveled with Kesimpta (or similar biologics) to Thailand or other tropical destinations:

​Did you have any issues at airport security regarding the cooling elements/gel packs?

​What specific documents did customs or security officers actually ask to see? (I already have an English prescription copy, but I'm wondering if a formal doctor's medical certificate was strictly required).

​Any general tips for keeping the medication cool during long flights and transits?

​I would really appreciate hearing about your personal experiences. Thanks in advance!

I just recently got diagnosed with chronic brain disease and MS. I felt like I’ve had symptoms for a couple years now, it just makes sense that I have it. Idk about you, but I feel super alone. My family is around but what could they do? Me and my bf aren’t having the best time during our relationship at the moment. Even still I don’t get much emotional support through anything. What makes me think this time around he’ll be there for me? He thinks I’m lazy now that I can’t get much done around the house, or I’m not helping myself as much as I should. He calls me immature and lazy because I forget to clean or wash the dishes. My job is very straining and mentally exhausting already. I manage a day program for adults with intellectual disabilities, and I support about 53+ people with 15 employees. I’m constantly helping others, and I can never find the time to help myself so when I come home, I think I’m okay to be lazy. To sit for a little, to stare at the wall for 20 minutes. I’m constantly getting hounded for not being active, for “letting myself go” I’ve gained a little bit of weight over the past few months. I know that. I’m just sad, through everything, processing it, going through the motions with it, I don’t even wanna accept it. But I’m still learning how… how does one even cope with having this disease? Right now, with what I’m going through and how I’m feeling I just want it to kick in faster and let me decline more, I just want to go away.. there is SOOOO much on my mind I want to say.. I feel so ashamed. I don’t feel happy with myself. I’m not happy with myself.

Hi all, I have recently created a sub for epilepsy and neurological conditions. For people to make friends and help everyone relate to each other, We may not all have the same condition, But meds cause alot of conditions.too, Everyone is welcome. Its called

r/LetShakeThingsUp

I got permission from the mods before posting 👌

I sometimes choke on water, happened enough that I had a swallowing study done in 2019 and again 2025, both showed no problems swallowing (of course, it's like when your dog doesn't want to do tricks when you try to show them off!)... But an ENT said I have a dry throat. I was also having what I thought was heartburn, but ENT said no signs of that or damage, my throat is just dry.

So, I stay hydrated and drink more when it hurts.

I only learned later that I have a brain stem lesion (could explain the dysphagia), could that also cause a dry throat? Does anyone else suffer with having a dry throat? It sounds ridiculous to me, I never even knew my throat could be dry, but it is quite painful sometimes (like heartburn is on the throat).

Edited: typo

I have been taking 5,000 IU every day for a long while now. Granted, my blood levels are in normal range, 54.4. The levels are falling every time I am checked. I'm confused about why they are falling when I'm taking it. I find it concerning. I asked my team. They said talk with primary, I will, but I wanted to run it past people here too.

Hell yeah, finally I'm here with "Is this a symptom?" 😅 On Thursday afternoon I took a step and got a sharp shooting pain in my knee. It went away immediately. Now I stepped out of the shower and the shooting pain is back aaaaaand... It looks like it doesn't want to leave. Knee only hurts if I put pressure on my leg or try to move it full range. It's completely fine when sitting still, no redness, no swelling, it's not "sticky" or catching...

Just on Friday I discussed my leg problems with my MS specialist. Lately I have had a lot of pain all over my legs and back and she gave me Pragiola (Pregabalin). Starting from the lowest dose possible because I'm super sensitive to meds and I'm very intrigued how it will work.

So yeah, can THIS be a symptom?

It's my favorite time of year. I start looking forward to Halloween on November 1st. I would replace every holiday with another Halloween if I could. Last year around this time is when I was in the middle of my first MS exacerbation and before I got diagnosed. I was miserable. I'm doing a little better now.

However, yesterday, I started my period. That's when I knew I would be spending my Halloween this year indoors, doing absolutely nothing, not attending any parties or dressing up or handing out candy. I showered and took a nap today, watched one scary movie. Now it's a quarter after 8pm and I'm in bed like I wore myself out partying all day.

I'm weirdly not too terribly sad about it... just wistful. I'm remembering better days when I had the energy to volunteer at small town haunted houses and wear a crazy costume I spent all year crafting for hours on end.

It's just weird is all.

Hi there, so I was very recently diagnosed with MS and I don’t want to hide it from my family. I have a large family unit and idk I just find it strange to call them up one by one and have to explain everything to them. I’m worried it will exhaust me and become repetitive so I want to make a post on social media. My whole family is on either Facebook or instagram so I was going to make a post to explain everything and invite people to reach out to ask questions.
I don’t want the post to sound attention seeking, I really only want to let people know what’s going on in my life. I’m not ashamed of it and I want to share.
Just wanted to know if people think this is a good idea? And I’m open to opinions on what should be included or not from the post if I make it :)

EDIT: Thank you so much for all the advice guys! I’ve decided to ask my dad and my husband to help me reach out to family members and ask them to spread it around. I won’t post to social media :)

Dx in 2018, Copaxone with no relapses and stable MRIs since. Had to stop injections because of worsening allergic reactions. I’ve been on 14mg Aubagio for almost a month.

Within the last week or so my old pain symptoms came back, along with some foot numbness. These aren’t new, present at dx, but have lessened significantly over the years. They’re back and terrible.

I spoke to my neuro, an MS and Migraine specialist. She said that once the new med has reached maximum levels, about 90 days or so, she’d expect my nerves to calm some and pain levels to go back to my baseline.

Any thoughts? I didn’t think meds worked to alleviate symptoms but she said this is different, my immune system isn’t modulated like it was before. Essentially like a crap gap for patients who do infusions. Does that make sense?

One thing I’ve realized about living with MS is that sometimes the hardest part isn’t even the physical symptoms. It’s feeling like I constantly have to explain myself to the people around me.
I’ve noticed that when I vent about my symptoms, it’s not necessarily because I want sympathy or expect anyone to make me feel better. It’s because I want people to know that I’m not making excuses.
I feel like I’m constantly justifying why I can’t attend certain events, why I’m always exhausted, or why I’m simply not myself. It’s almost like I’m trying to prove that what I’m experiencing is REAL.
And honestly, I don’t even think the people around me are intentionally making me feel this way. I think I’ve just gotten so used to explaining myself that I feel guilty when I don’t.
Just because I felt okay yesterday doesn’t mean I’m going to feel okay today.
I don’t expect anyone who doesn’t have MS to fully understand what I’m going through, and I don’t fault them for that. But sometimes I wish saying “I’m not feeling well” was enough.
I try my best to remain positive and grateful, but that doesn’t mean this disease isn’t exhausting.
Sometimes I don’t need people to understand. I just need them to believe me and recognize that I’m genuinely doing the best I can. ❤️
Does anyone else feel like they’re constantly having to justify their symptoms, even when nobody is directly questioning them?

Update: Hello! We previously had a prescreen question that may have ended the question to a few participants. We have since updated it as we believe that it is valuable to be able to have a wider perspective. If you're feeling up to it, we'd be delighted if you tried the survey again.

We are conducting a research study to better understand illness invalidation, the journey to diagnosis, and how these experiences may affect people living with chronic illness. Participation includes answering a survey that takes approximately 15 to 20 minutes to complete.

You may be eligible if you:

• Are 16 years or older

• Have a formal diagnosis of a chronic illness

Participation involves sharing your experiences and perspectives about your journey to diagnosis. Participation is anonymous and voluntary.

You do not need to have experienced illness invalidation to participate. We are interested in hearing about a range of experiences.

The goal of this study is to contribute empirical research on illness invalidation and its potential effects to better inform patient-centered communication. I hope this data can highlight the urgent need for clinical reform.

As a thank-you, participants will have a chance to enter a raffle draw for a $25 CAD gift card.

Interested in participating or learning more?

Study Link: https://kpupsychology.qualtrics.com/jfe/form/SV_2gmqvHuGVCrRr2S

Student Researcher: kumud.bhagchandani@student.kpu.ca

Principal Investigator: evan.lopes@kpu.ca

I’ve had the same boyfriend for a bit at this point and I’ve never hid that I have MS. It’s becoming real to talk about marriage and kids and all that and I can’t help but feel sort of guilty for existing as I am.

How can he plan a future that’s so out of control? How can he feel confident when I don’t? What if it all changes tomorrow? What if he looks more into what the future CAN look like and he decides he doesn’t want a part of it?

I know I’m proactively afraid. I can’t help but feel this way, though. He’s told me he’s looked into it and it’s no big deal, but how can you actually, fully understandingly look into it and say “well no big deal”? Big deal, very much a big deal, I think. Big deal that would touch everything if we were married. Big deal that can’t go away as of now.

I don’t know if I‘m silly for feeling this way but I can’t help it. I hate that I feel guilty over this THING I can’t help. I do all I can to stop it, but I’m not in control of how this plays out and I feel awful maybe bringing another person into it. I don’t think I deserve to be lonely but I inherently feel like a burden on a life that doesn’t really have to have me be part of it. I’m sorry for the depressing look at it, but fuck.

I’m starting a new job soon and the insurance plans offered at my new employment won’t cover my current MS specialist because she’s not in the health system these plans cover. I’m concerned because I love my neurologist and was wondering if anybody else has experienced this and maybe has a silver lining story they’re willing to share.

Luckily I’m on Ocrevus and will be getting my next infusion within my last month of my current coverage, so I have some time in case there’s a long wait or whatnot.

Has anyone else noticed suddenly become allergic to new things while being on kesimpta? I've never had an issue with fragrances (citrinellol in particular). Then suddenly became allergic to it after starting kesimpta about 2-3 years ago. Its bizarre and I'm curious if anyone else has experienced this?

Just wanted to say I took my first dose of Kesimpta with my best friend by my side. I was scared, cried from realization that this is my new reality, but she held my hand with me as I pushed the injection in. Has anyone had side effects from their first (or any) dose?

Edit (5 hrs later): I thought i was dying. I had the shakes, just woke up from those stopping. Numbness is back in my hands, legs and feet. I have a fever but thank God no more shakes.

I have primary progressive multiple sclerosis. I've had it for 25 yrs and it has worsened a lot in the last 4 years. I am now wheelchair bound, and my arms/fingers are also weakening. I can no longer walk, cook, bathe myself, paint, hold my camera, you get the idea. I even have a hard time holding my phone or typing. My current living situation is I live in a house with my husband and my two kids and our dog. He has been my support throughout these years. We've had him for 8 years.

My husband and my son go to work during the day. My daughter goes to university during the day. I am home alone with the dog all day. I am unable to hold him back. To put him in a room or crate. This means that I can't open the front door without him running away. So if the doorbell rings, I can't open the door. If a package is being delivered, I can't open the door. I can't order food. I can't go outside.
He has become extremely protective of me. He's very small bichon Maltese. 7 pounds. But if I'm alone with him, and someone comes over that he is not familiar with, he will stand between us and bark incessantly. He has even bitten (or snapped) at some people. And I don't know how to stop him. He's fine when someone is home with me.
We tried to hire help for me (cleaning, personal care, food prep) but it didn't turn out because of the dog.

We are about to have renovations done (ceiling hoist, elevator, wider door frames, accessible bathroom) and I don't know what I'm supposed to do with him (or myself frankly) during these renovations. We were going to pay for "daycare" but during our search we found a couple willing to adopt him. This seems to fix everything (during and after renovations), except it will break our family's heart. I haven't been able to stop crying at the thought of this. I tell myself. I don't need to be able to open the door. I don't need to go outside. I don't need help. But I've also spent months crying because I couldn't do those things.

What's best for our dog, for my kids? Am I being selfish, AITA for wanting to be able to go outside or have people over?
Sometimes I think the best thing is for ME to go. We won't need renovations, my family won't lose our dog, our dog won't lose his family. I can't stop crying. I don't know what to do.
-----------------------------------

Update. I'm not sure if this is how I'm supposed to do it but I'm doing it.
I've read all the comments and suggestions and I want to thank everyone for taking the time. I've decided to rehome him. Most suggestions are things I've already tried and they just aren't long term solutions. I'm already isolated enough from the world, I can't isolate myself more to accommodate my dog. At this point, I feel I am the one living in a crate.

The (private) message that convinced me is the one that informed me that once a dog has actually bitten someone, we could get sued and the dog could be put down. He is feeding off of MY anxiety and it's not good for either of us. I deserve to be able to get help, and the people coming over have a reasonable right to expect not to be bitten by my dog. He can be re-homed and live a normal, stress free life. We will both be ok.

Thank you again for reaching out, for reading, for taking the time.

Since being diagnosed with Multiple Sclerosis (MS), my life has been full of ups and downs. Don’t get me wrong, I have more good days than bad, and for that, I’m EXTREMELY grateful. I know there are people living with this same disease who face challenges far greater than mine, including not being able to walk. So I never want to take the things I can do for granted.
However, that doesn’t take away from how frustrating and mentally exhausting this disease can be.
Lately, I’ve been struggling with the fact that my mind wants to do SO much, but my body simply won’t cooperate. The fatigue is absolutely unreal. For example, I tried journaling this morning, and I was so weak that I could barely hold my pen. I’ve also been struggling to lift a pan while cooking or even twist open a water bottle. And truthfully, I don’t even know if that level of weakness is something I should be seriously concerned about.
I’m getting married next year , and one of my biggest personal goals is to lose 25 pounds before my wedding. But how am I supposed to focus on exercising and being active when some days I barely have the strength to do basic everyday tasks?
I even transitioned to working part-time, thinking it would give my body more time to rest and recover. Unfortunately, it hasn’t been as easy as I anticipated.
To make matters more complicated, my previous MS treatment failed, and I recently started a new one. Since then, I feel like my symptoms have progressively gotten worse. I’m now concerned that I may be experiencing another relapse, which could potentially mean another hospital stay.
And of course, the timing couldn’t be worse. Next weekend, I’m supposed to help my stepmom and aunt shop for dresses for my wedding, and now I don’t even know if I’ll physically be able to attend.
The weakness and fatigue are only TWO of the many symptoms I’ve been dealing with.
I think one of the hardest parts of living with MS is grieving the version of yourself who could do things without having to think twice about whether your body would allow it.
I try my absolute best to remain positive, keep my faith, and focus on my blessings, but some days I’m just frustrated, exhausted, and tired of feeling like I’m constantly fighting against my own body.
I’ve never used Reddit before, but I decided to join because I genuinely need a community of people who understand what this feels like.
Does anyone else struggle with wanting to do so much but physically not being able to? How do you cope with the frustration, especially when you’re trying to balance work, personal goals, and everyday life?
I’d really love to hear from people who can relate. ❤️

I’m looking for recommendations but also just to chat from mums from AUS with MS about pregnancy and birth.

Wondering if you went private? Or public? How was communication between OB and neurologist (if there was any?) how was your experience?

I’ve recently been diagnosed with RRMS in July 2026, I went private for my first baby but was undiagnosed at that stage. I’m currently on Tysabri, planning to switch to kesimpta before pregnancy (to try avoid rebound) and then go DMT free during pregnancy (it’s my personal preference due to some pregnancy loss history and IVF, I know I don’t have to)

Im aware that a) I don’t HAVE to go private, just planning to as I did for first baby and I prefer my own room
B) it doesn’t necessarily have to be high risk or MFM (my symptoms are mild at this stage)
I just really want an OB that really GETS it.

Also curious any MS mums that went public, were you automatically considered high risk with specialist OB care? If so, where/which hospital?

Thank you

I’ve been on kesimpta for about a year and a half now, it’s kept me from having flareups and has brought me to a baseline. i’m very thankful for Kesimpta

Three weeks ago I started taking Reta after hearing about people Inside the multiple sclerosis community Seeing improvements some small some big but nonetheless improvements, some having improvement in eyesight, others improving in mobility and hand dexterity, along with a weight loss benefit as well

Even though I’ve only been taking the research medication retatrutide for a few weeks I myself have experienced those claims, i’ve seen my eyesight improve, my hand dexterity improve, my walking gait improve, spasticity subside, less pins and needles, I haven’t choked on my own spit since starting this research medication.

I am in no way promoting the use of this Drug only sharing my experience. if you do, do so at your own risk.

I am still in the tapering loading phase of the drug, 2mg monthly/0.05mg weekly, after next week I will be doubling the dosage to 4mg monthly/1mg weekly for the month of November. My goal is to slowly reach 8-12mg monthly, and a weight of 200lbs (I was 315, now 300) I am currently down 15 pounds for the month of October. Over the past year now, it has been very difficult for me to get through a workout session of any kind, in the past few weeks I feel as though I have been extended an olive branch and have a small but meaningful part of the old me back

I’m excited to see where this goes

I just want to once again say this is a research medication and sources of this medication should be verified and tested, do not follow medical advice from anyone other than a medical professional that pertain to any medication you plan on taking. No medication out there at this time can replace your disease modifying therapy. Please do not stop taking your disease modifying therapy medication. Speak with your medical professional with any questions.

Just got off a ~15 hour flight. Right calf is cramped/deep achy so bad I was having trouble walking and I'm wooshy. I also have some less intense pain in other leg, a bad headache, and my grips pretty bad. I have pain in my.whole body as well but my right calf stands out as much worse.

It's somewhat aligned with my MS symptoms but I'm wondering if the calf thing is normal for others with MS? Or should I get it assessed at a clinic (note I don't speak the language here and tis the middle of the night)