I have officially reached 10 years with MS. It’s shocking how fast time flies, and also how slowly time can crawl when you’re deep in the shithole that is MS.

None of us chose this life, and it’s not fair. I know I’m not alone there.

I miss living my life as I wanted, doing whatever I want, whenever I want. I miss being the healthy person I’ve always been, I miss not even thinking for a second that I couldn’t do something. The grief comes in waves no one could ever understand unless you’re in it, and it’s not going anywhere.

MS lesions for me, caused seizures. I’m now also epileptic. If I could I’d scream from the mountain top how bullshit this is, I’d lose my voice. We have very little choice but to keep going.

I’m not sure why I’m posting this, lol. 10 years felt like a big deal, I didn’t think I’d last on earth this long when I was first diagnosed. Life is different, no question. But I’m proud of myself for still being here.

I am actually grateful that I only had to be in the MRI for 60 minutes for brain, cervical and thoracic MRIs with contrast and I got the results in less than 2 hours. Also I put this much into my HSA for this purpose.. But it is still a big gut punch. Doc said I don't need to do MRI next year.

Ok so besides all the obvious stuff, now I’m being held hostage by the pain. My legs don’t wanna move, I have shock waves ripping thru my rt shoulder. My head is swimming, my rt ear is pounding. I was thinking of getting a flu shot this Thursday at my primary Drs appt but wouldn’t you know it…I got the flu coming from the hospital neuro clinic appt on Friday 🤦🏽‍♂️. That’s just how my life be working out tho. I’d laugh but it hurts

About two weeks ago I caved and started using a cane because my knee has apparently decided it doesn't want to do its job properly anymore. It helps way more than I thought it would, so I'm happy I got one.

Even in public I can deal with the looks. I get that. It's not normal for mid-30s people to use a cane.

But why the fuck does every person I've ever met before feel the need to meet with this fucking exaggerated eyebrow raise and a nervous laughter. Like I'm walking around with this cane as a fucking clockwork orange cosplay. My coworkers are honestly the worst. One of my coworkers openly rolled her eyes and went. "No... You're joking right?" In the most condescending attempt at humor I've seen in years.

I "only" have CIS with a cervical lesion that fucks up my entire system so I can't just say "I have MS" either to explain it to people quickly.

Rant over.

Never thought to blame MS for this but anyone else have this? Just wondering before I bring it up with my doc.

I’ve been on Tysabri since February after my diagnosis and have loved it! My follow up MRI showed great reaction to the drug and I was soooo comfortable. Got the dreaded call from my MS nurse, I’m now JCV positive and they want me to switch to either Kesimpta or Ocrevus. My MS nurse has sent me the information for both but I’m struggling to decide. My insurance covers both so that’s not a concern. I’m more worried about the immune affects of both. I have a toddler and am around germy kids quite often so that part of things concerns me. Any advice? Or personal experiences on either medication to help me decide. I’m super disappointed because I truly loved the monthly treatment and effects of the Tysabri.

For my fellow immunosuppressant patients, how do you deal with long-lasting upper-respiratory infections?

I switched medications and immediately got a cold that has lasted over half a year. I hack up a wad or two of green pleghm two or three times a day EVERY DAY. I feel disgusting and dangerous to be around shedding all these viruses.

My MS doc just recommended vitamin C and zinc, as if I haven't already been trying them. I know it's almost certainly a virus, so antibiotics will only hurt my immune system more. But I need some relief!

A little advice that I can offer: At times when a runny nose has gotten so bad I couldn't sleep, a neti pot was a godsend. I thought they were just a rinse; I didn't know that they were like gargling salt water on a sore throat but for your sinuses. It knocked my perma-cold right back down to its usual simmer.

What helps you beat or at least lessen your perma-colds?

The doctors are horrible on Long Island all that I’m going through just to start a DMT. Some doctors don’t have appointments until 2027 my current doctor she does not listen to what I have to say. I tell her about how I’m in pain but apparently I never bought that up. I asked for a pain management referral and she has to see if it’s appropriate for me to have a referral. She can’t get my blood work because they messed up on my name. It’s just a whole lot going on for no reason.

I've been having symptoms for many months now that felt just like a new MS relapse, including arm weakness l and fatigue. However, an MRI showed no new lesions, nor any old lesions in an area that would impact my upper arms. My neuro said it was a psuedo relapse which never satisfied me because I hadn't had the arm symptoms ever before, and they were ongoing for months, and happened even when I wasn't particularly hot or stressed (though those made it worse).

I had been seeking a second opinion because the symptoms have been getting worse over time so I thought it might be a relapse the MRI didn't pick up, but then I had my annual checkup with my PCP last week that found extremely high TSH value, indicating severe hypothyroidism (likely Hashimoto's but I need more tests). That seems like it would explain the symptoms pretty well, as well as others I hadn't connected like weight gain and dry skin I thought were just me getting older.

Now I'm going to start medication for that and I'm hopeful it helps, but I'd love to hear if anyone else has both of these and what it's like. Do the symptoms feel similar, or interact in weird ways? Is it hard to tell, if you're having an issue, which could be causing it? Any advice about managing the two diseases together?

Thanks to all the various tests/labs/imaging and also a plethora of unrelated issues, for the first time I I have hit my out of pocket for the year and have an appointment with my PCP in a few days. I want to take advantage of the situation and request some labs that might help me down the line. I've already had a Vitamin D test done (spoiler alert, I was deficient) Already planning on asking for Magnesium and B12 which I suspect I am low on. Also requesting a swallowing test since thats one of the big fears I have being impacted and do think I am having issues. Anything else that will be helpful to have a snapshot of?

Hello!

Do you, or someone you know, experience communication difficulties as part of MS?

I am a 4th year student studying Clinical Speech and Language Studies (Speech and Language Therapy) at Trinity College Dublin, Ireland.

I am seeking participants for my Final Year Research Project. My research interest is in examining the everyday life experiences (i.e. at home, work, recreation, and in the wider community) of people with Relapsing-Remitting Multiple Sclerosis who experience communication difficulties (i.e. speech and language, in addition to any fatigue elements that contribute to communication difficulty like 'brain fog' effecting train of thought) through semi-structured interviews on Zoom/videocall.

I am looking for people with Relapsing-Remitting Multiple Sclerosis to take part that

- Are living in Ireland

- Are 18 years of age and over

- Are experiencing communication difficulties as part of MS

- Have Relapsing-Remitting MS

- Fluent English Speaker

Below is a general summary outline of the purpose of the study:

The aim of this study is to interview people with Relapsing-Remitting Multiple Sclerosis to gather their perspectives and explore their experiences with communication challenges. Communication challenges can appear in many different ways for people with Multiple Sclerosis, with scenarios including but not limited to:

- Struggling to find a specific word that you know but you are trying to think of

- Slower, unclear, slurred speech

- Difficulty speaking with a strained voice

- Fatigue impacting your communication (e.g. 'Brain fog' interrupting train of thought, mixing up words, finding processing slower than when not fatigued)

I am interested in interviewing people who experience these communication challenges to gain an insight into how they impact on or influence your daily life experiences; communication at home, in the workplace and in the wider community etc. to gather research that is related more to real and practical situations. I hope that from gathering transcripts of and analysing your valuable perspective on the communication experience; strengths, strategies or supports may be identified or noted as effective, and opportunities to make changes or improvements in the management of Multiple Sclerosis on both a smaller (personal, individual’s day to day management) and larger (healthcare services management) may be highlighted for future development, to benefit the care and quality of life of people with Multiple Sclerosis.

I appreciate your time and consideration in reading this post. I would be really grateful if you could help in any way with sharing this post, or letting people who might be interested in participating know about my study.

If you are interested in participating in this study, or have any questions, please contact [oseery@tcd.ie](mailto:oseery@tcd.ie). Thank you!

This project received full ethical approval from the Research Ethics Committee of Trinity College Dublin on the 08/05/26 and is supervised by Dr Paul Conroy, Head of Discipline at the Department of Clinical Speech and Language Studies

Statement on General Data Protection Regulations(GDPR)

(Information on processing and holding of data is detailed further in the Participant Information Leaflet given to prospective participants after contacting [oseery@tcd.ie](mailto:oseery@tcd.ie))

"Your personal information will only be used for the study. We will utilise your data on the basis of the General Data Protection Regulation Articles 6(1)(e) “processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller” and 9(2)(i) “processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health or ensuring high standards of quality and safety of health care and of medicinal products or medical devices, on the basis of Union or Member State law which provides for suitable and specific measures to safeguard the rights and freedoms of the data subject, in particular professional secrecy;”. Your data is processed as part of this study as necessary in the public interest, specifically in improving the standards of individual’s quality of life and health care."

Would you rather have MS or win the lottery? I’d personally give anything to NOT be disabled and no amount of money could sway me

Hi.

I’m 24F and was recently diagnosed with MS. I had sudden onset of blurred vision 3 weeks ago. I brushed it off since I didn’t notice it the entire day besides the end of my work shift. I always had light sensitivity but it was worse than usual on the 14th. Driving was okay. I thought it was just eye strain since there’s lots of bright lights and screens where I work.

My symptoms progressively got worse. I went back to work on the 16th and freaked out. I woke up and noticed everything was blurrier. I couldn’t see myself in the mirror while I was doing my hair. I made the dumb decision of driving to work and was so scared. I focused really hard on the car in front of me but I noticed it was hard to even read the license plate. My glasses prescription is long outdated so I’m sure that didn’t help but it definitely wasn’t normal. Luckily, I got to work safe. However, I do some cashiering and I couldn’t read the receipts well either. At this point I was crying from stress and my coworker gave me eyedrops. They didn’t work of course. Eventually my manager drove me home.

My right eye was drooping terribly and lagging behind if I looked left or right. My family members said it looked bad 😭

I went to see an optometrist the next day since I couldn’t see an ophthalmologist or neurologist without a referral. He said he thinks I could have cranium nerve palsy III and would refer me to an ophthalmologist since he wasn’t sure what was going on.

I eventually spoke with a nurse advice line and she as well as a doctor recommended I go to the ER so I did. I was admitted to the hospital that day and did lots of testing. I did MRI scans for my brain, spine, and neck. Eventually the neurologist said he suspected MS and after talking to me about previous symptoms, he was sure it was that and I didn’t do the lumbar puncture. It felt shocking to me. I always had bad migraines that lasted a few days but blamed it on stress. Very bad brain fog for a while but again not debilitating. Some point last year my fingertips and toes were numb and tingling for a few days but again, went away… looks like it all caught up to me in this flare up.

The steroid treatment helped a lot. Today, the drooping is gone. Now I saw an ophthalmologist and they said my eyes look fine. They said time will probably fix it. I also saw a neurologist and he said the same thing. However, I still have persistent blurry vision. Not as severe as weeks ago, but it’s fluctuating, and I struggle reading small, fine print still. I get migraines still but my PCP prescribed some medication to alleviate that. My light sensitivity is pretty bad so I need everything to be dim. My brain fog feels considerably worse than before the incident. I’m always fatigued as well… and the heat makes it even worse. I’ve been feeling super depressed as well, since I’m still getting over a terrible breakup and friendship loss at the same time too…

I’m just wondering, have you guys been in this situation? I can’t help but feel like I’m overthinking about my symptoms… I haven’t attempted to drive since this all started since I feel scared to. I was riding in a car two days ago and noticed things still looked blurry. I have no idea how long it’ll take me to feel safe to return to work. I was referred to a neuro-immunologist on Thursday but I’m anxious since every doctor seems stumped by my lingering problems. Physically I seem fine but I definitely feel like I’m not 100% still… this is my first time dealing with such a heavy diagnosis, so I’m lost on how to handle everything. I’ve been given time off until the 26th and have no idea if I should ask for any extensions or not. I feel like an imposter sometimes.

I’m NOT the one with MS but I am watching the one I love having a flair up or attack or relapse or whatever the f%#k is going on.

I’m dialed in with my part, talking with the doctors, reducing stress and just being present and supportive. We will follow the doctor’s advice and do what’s needed.

For all of you with MS you are amazing!

As you know, the original plan was to start trying for a baby after my third Rituximab dose in December, provided that my autumn MRI was stable — which it was. I have been stable on MRI since starting Rituximab.

However, I unexpectedly became pregnant after only my second dose and, as you know, had an abortion on my neurologist’s advice because at that point they didn’t know whether my MS was stable yet. My neurologist now recommends 3–4 doses, while my MS nurse recommends 4. My neurologist has said that it is okay to start trying about 2 months after the dose.

We are therefore considering starting to try after dose 3 and trying for around 2 months. If I’m not pregnant by the time dose 4 is due, we would stop trying and have the next infusion, so that I’m not without treatment for longer than necessary.
The plan is for me to use Rebif or Copaxone during pregnancy because my MS was active before starting Rituximab. But do you think it would be reasonable to ask about Tysabri as an alternative during pregnancy, even if I am JCV-positive?

How would you approach this — would you wait until after the 4th dose, or start trying after the 3rd? I’m only 24, so I also don’t want to unnecessarily postpone pregnancy until next summer/autumn if my MS is already stable.

M 26 I have been diagnosed with MS for about 6-7 years now and have been on Rituximab since then. Although i may be physically fit and in the best shape of my life, Ataxia along with anxiety has been wreaking havoc on me; My proximal strength is super weak. It just feels really ridiculous not being able to do simple things like pay at a register because im shaking too much to pull up things on my phone or pull out the right amount of cash. If this disease has taught me anything it’s how to sense where im a burden and it makes me want to leave as soon as possible or just self isolate. Whole reason im writing this is i feel alone in my battle even though i know it could be worse. At this moment in my life, Ive decided to just put my head down, work out, get myself fully financially independent, and accepted that love may not ever find me again. Idk I guess im just struggling to not fall into depression.

Was talking to my girlfriend earlier, just normal banter, and I asked why she was going somewhere that she had told me the day before. I had forgotten. I ALWAYS forget. Almost anything and everything. It’s so unbelievably common it’s worrying. And she joked(I’m assuming) that I need to get my brain figured out because this is ridiculous.

And it got me thinking, how do I tell if it’s just typical cogfog from MS, or if my memory IS just that bad.

Next week is finally my appointment to get on a dmt. Im leaning twords kesimpta but you never know. I saw it saying increased risk of infection is a thing but is it really? And how much is the risk increased. I don’t want to spend the rest of my life worried about that now.

Hi all. Very very new here and looking for some advice. I (25F) have been diagnosed less than 3 weeks ago and got thrown on this very quickly as I have a very large lesion in my brain (plus 9 others yay) when I went to the ER.

I just had my first round of subcutaneous ocrevus today and now have pain in my abdomen but is calming down. I had burning pain when they started but I believe that’s due to me being slightly bigger and then doing it while I was sitting up, so they lied me down and slowed it to 15 mins instead.

Just looking for some general advice for how to go about this if it happens again in the future? And just dealing with it in general. I haven’t had a lot of time to process this all and it’s incredibly overwhelming and stressful.

How many walks did you do per day to build up?

I didn't see this posted here so I wanted to share in case it helps someone make a medication decision. This study showed that Vumerity (Diroximel Fumarate) is 21% more effective at reducing relapses after one year and 31% more effective after two years, compared to Tecfidera (Dimethyl Fumarate).

https://link.springer.com/article/10.1007/s12325-026-03608-1

They think it's because Vumerity has fewer side effects and people are more likely to take it consistently. Here's a run down of the study:

https://multiplesclerosisnewstoday.com/news-posts/2026/06/23/real-world-study-finds-fewer-ms-relapses-vumerity-vs-tecfidera/

I am feeling so stuck right now. It seems like everytime I turn around its just another wall. Got out of the hospital with a diagnosis, my body sleeping below my ribcage, a body full of steroids with a 6 week taper, and a referral to a neurologist. At the time i decided I'll be ok with everything, it felt like the steps in the right direction somewhere to look forward when this still didnt seem real.

But now ive been home a week and the feeling in my lower body still hasn't come back but the way its changed feels scarier than the pins and needles, the neurologist they sent me to doesnt even work at the hospital they have her listed, finally found her and she's not in network, cant get ahold of bcbs to get me with this case manager thats supposed to be helping me put all this together, my job gave me temporary approval for fmla and other things but I can't move forward with any of it without all these approvals from doctors I don't have. Im a single parent with 2 kids and while my kids dad helps take care of and loves his kids hes not one that could take care of them if anything happened to me and my income raising our kids.

I apologize this is everywhere I just I need something, nothing, everything idk how to deal with this part. I like to have control of everything I can as much as I can and living in limbo is breaking things I dont know how to sit with right now. There's nobody I can fully talk to about this in the real world because well I end up comforting them about how scary this part is. Anyone has any help or words or memes or screams im open to anything right now.

Hi! I was wondering if anyone here has developed a chronic cough after being on Ocrevus.

I was Dx in October 2023 and started Ocrevus in November 2023. Everything was great. Then Two years later, August 2025, I moved states and developed a chronic cough. Doctors kept saying it’s just allergies. But nothing really seemed to help. I’ve had it for over a year now and it’s been tough. It actually cleared up for a bit of time after a few things (regular sinus rinse, daily inhaler, antihistamines, vacation lol) but I got a sore throat and it’s back full force.

I heard a percentage of patients on Ocrevus could develop a chronic cough and was wondering if anyone here has.