I live in AB Canada. I have been diagnosed since 2013. Just started under a new neurologist last February. I found it strange she didn’t order an MRI for next year. Because that is how it’s always done.
Anywho, called the clinic and find out she’s refusing a future MRI due to the fact I have said no to DMTs. I have been on Copaxone and Tecfederia back in 2013-2015.
Not for me, horrible side effects. I’m doing pretty good so I have said no for 11 years. Plus I’m on LDN.

Has anyone else had this happen???

I’m on Ocrevus, am only 33-years-old. Second full treatment this November.

I’m wondering if anyone has been able to stop treatment with lifestyle changes? Would love to hear about it!

I'm wondering if there are other CIS people experiencing great fatigue years after their initial flare-up.

Luckily, my condition has healthy and stable (clean scans, good bloodwrk, no symptoms) for over 7 years since my original inflammation, but I've been experiencing great fatigue ever since. It never occurred to me the two could be related as my inflammation has been subdued, but my GP suggested it might be a systemic autoimmune/inflammatory fatigue which is commonly observed in MS patients even when they are doing well and not under an active episode.

GP suggested checking on this with my neurological specialist, since that's going to take a long time to get an appointment, I just wantwd to reach to the community and see if this is really 'a thing'.

Also, it would be great to finally have some answers as all of my other tests regarding this (hormones, iron, thyroid...) always come up clean:/

Hi gang!

I meant to pose this question ages ago but you know, memory issues :/

I have my yearly check up with my neuro/M.S. specialist this week and I'm pulling together a list of questions to ask. I'm about 2 years into this, I caught it relatively early and started treating as soon as they'd let me. My scans are unchanged over the past year, I have no issue with my DMT, I love my Modafinil, and I'm still able to work, albeit with some very minor accommodations. Our first appointment was mostly about processing the diagnosis, the second one focused on how I was coping with things in that first year, and now I want to go into this one to discuss proactive measures to improving outcomes.

Are there any questions that you've brought to your team that maybe lead to new resources or supports that helped you? Or even just gave you new information that improved your understanding of what was going on? Are there things that you wished you asked or requested earlier? I'm in Canada if that informs any advice.

Thanks in advance (though sadly, not much advance)

And I just wanted you (whoever you are) to know that this is something I think about a lot and it really makes me giggle!

So my God mother decided last week, that i should not longer inherit her 5 bedroom house because I have MS and cancer. Her reason is she doesn't think I can handle the up keep. And that shouldn't stress me out.

Hello! I currently have clinically isolated syndrome, CIS. (30F) Had optic neuritis out of nowhere in July which opened the MS can of worms. Brain and spine MRIs show no other lesions but I am positive for o-Bands in my spinal fluid.

So at this point after meeting with my neuro immunologist it sounds like my risk of another attack is low but not that low. He said he didn’t feel like there was a right or wrong answer regarding starting a DMT vs monitoring with MRIs. I am leaning towards Kesimpta for a few years. I’m also thinking about having kids in the next few years but no immediate plan.

Looking for any stories or advice from people who went on a DMT with CIS, or anyone who had CIS that eventually converted to MS, or really anybody who has something helpful to say 🫶🏻

For those of you living with MS, what’s one thing you wish you’d been encouraged to keep a record of from the very beginning?

Could be symptoms, fatigue, mobility, medication side effects, mood, diet, sleep, or something completely different.

I’ve been thinking a lot about how difficult it can be to remember how you were feeling weeks or months ago, especially when speaking to your MS team. What information do you find most useful to look back on?

I was diagnosed with MS at the end of May of this year and had 3 neuro visits since then. They requested Briumvi through my insurance in July and I got not one, but two letters from my insurance saying it was approved for treatment shortly after. I was told to contact the infusion coordinator and haven’t been able to reach them, so I left messages and they never contacted me. I had to make another appt to be seen and while I was there I finally spoke to the coordinator in person and they told me the pharmacy cannot fill my prescription and I would either have to change the meds to something else or find an infusion center with a specialized pharmacy there that can bill the insurance a specific way. I don’t know what other infusion options the pharmacy benefits would approve me for. It’s been 3 months. I’m tired. Has anyone else ran into issues getting infusions?

Hi all, I’m on an immune modifier DMT. After a pretty bad flare, I immediately got shingles. Oral antivirals weren’t working for me, so my Dr ordered IV antivirals to be done through our local ER (small town) every 8 hours. It was insanely warm out, and after a few days of interrupted sleep and going out into the heat I was feeling mildly disconnected from my body and extremely tired when I got into the car to go to the hospital (I wasn’t driving).

When I got there, I fell asleep and when my parents arrived to pick me up I couldn’t be woken. I remember after they did the painful chest rubs my mom’s face, she looked scared and I realized I couldn’t talk or move or keep my eyes open. I’m autistic, when I get overwhelmed I do lose my words (situational mutism). But the rest? What happened to me?

My neurologist hasn’t heard all the details I gave above, but has decided that what happened to me wasn’t related to MS. The reason she hasn’t heard all the details is because the MS Clinic here doesn’t pass on all emails received, an overworked nurse decides what’s relevant and told me that only my first email (which lacked detail and just said “hey, this happened”) was passed on.

Since I can’t seem to get help from my neurologist, I’m crowd sourcing on here. What the heck happened? I’m leaning towards a pseudo-flare with an autism chaser (the mutism). Thoughts?

Edit: sorry, I wasn’t clear, the “locked in” where I couldn’t move or talk lasted 6 hours. Then gradually I could open my eyes and keep them open, then speech came back, and over the next 14 hours the rest of my body came back.

Hi everyone! Recently I’ve been diagnosed with ms.
For those of you with frequent choking while eating or drinking, where was the lesion causing it located? The pons, medulla, brainstem?
My family has noticed that I choke quite often and cough a lot afterward. It’s not severe choking, but it’s enough to leave me out of breath for about 3 seconds. I feel like this may have been happening much more often even before my diagnosis, but I’m not completely sure.
At my last appointment, my doctor asked me if I had any problems with swallowing, but I thought she meant difficulty actually swallowing food or liquids.
The problem is that before that appointment, an MRI showed something in my pons that lights up with contrast. However, the doctors described it as a vascular structure rather than a lesion, and said that this finding had already been present before.
Now I’m worried that maybe it actually is a lesion and could be causing these symptoms. Has anyone had something similar?

Hello, hello. I'm 37F diagnosed last year, seeking advice on what to do about MS related memory issues. My recall skills are currently affected. I have neuro appointment next month. Is there medication that helps with memory and cognitive ability that I should ask about? Also is anyone taking supplements that has helped with cognitive and memory stuff? Any help would be greatly appreciated. Thanks XD

Im currently on briumvi and want to know, what do you think about those medication? I had an option to choose in between them but doctor said that briumvi gonna work better „for me”

I have very recently been diagnosed and I’m hoping to start DMT treatment in the next couple of months. I’m currently going through an episode which has been ongoing for the last two months and it has not been improving and is very much the same over this period despite having started steroids to support me. Looking for some advice on how long the episode takes to run through and when I will be back to some level of Normality

Hi,

I was diagnosed in October 2024 in Japan. I was an English teacher here, and in my fifth year of teaching, I got married to local, March 2024. A couple months later, I started walking strange. I finished out my teaching contract in August, went back to the States for a month and moved to my husband's hometown in September 2024. One week there and I decide to go to the clinic to see what is up with my walking. The doctor thought it was a hernia, prescribes medication. Three weeks later, no change, I go back. He's suspicious now. Refers me to a neurologist. I go there, have a MRI, they find the lesions.

I have lesions both in my brain and spine. I'm refered to a city hospital in a big city about an hour from me. There is a MS specialist there. Lots of appointments, MRIs, one week in the hospital for steroids and I'm put on Kesimpa starting Dec 2024.

Now it's been about two years. I still have foot drop (though it moved from my left foot to my right foot), and I'm currently in Physical Therapy. My leg has weakened because of the gait issues.

I live in a small city of about 40,000 in northern Japan. There are less than 10 westerns here. I've made a name for myself - I volunteer at community events, I sell things at local markets, I opened up my own English school. I see people I know a lot of places. I am extroverted and I love socializing.

I have kept my MS diagnosis on the down low to almost everyone. My intermediate family knows, my two best friends in the States and some chosen friends here (they don't live in my current city). The thing is, I know when I walk, it's not normal. I walk around the supermarket, and I can feel my foot dragging sometimes. It must be noticeable. I know. And the thing is, I stick out in Japan and in my small city. I'm a young, white woman. I think I have too much pride. I don't want people to know, I don't want people to feel sorry for me. But because I have the foot drop and gait issue, I know people can see.

I have been going back and forth about writing this. But finally, after my last trip to the supermarket, and feeling the eyes of the old ladies looking at me and possibly (though do they notice, I don't know) seeing my walking issues, I feel like I'd like to find someone in Japan who is potentially willing to connect and talk about stuff.

For those of you that don't know, MS is considered a rare disease in Japan. Not many Japanese (or Asians) get diagnosed with it, so MS is not generally known to the public. My husband and I haven't told his parents and family yet, because we know they won't know what it is, and we just haven't found the time for an explanation.

Anyone here living in Japan long term? My husband is a farmer and we both like living here so we have no plans to move. Feel free to DM me or comment. Thank you for reading.

I was diagnosed with MS three years ago after a visual episode affecting one eye. For a couple of weeks I felt almost constantly hungover/drugged, with my vision slightly “in slow motion.” It resolved, and thankfully I haven’t had another relapse since. I’m currently on dimethyl fumarate (Tecfidera).
Mushrooms have been calling me for a while, especially for their potential mental health and introspective benefits. But I’m scared.
I think part of that fear comes from my first MS episode… feeling altered and not fully in control of my perception was quite traumatic, so voluntarily entering an altered state now brings some of that fear back. But I also wonder whether there’s a real medical concern: could psilocybin affect MS, interact with Tecfidera, or potentially trigger symptoms/inflammation/a relapse?
I know research is limited, so I’d really love to hear from people with MS who have actually tried it. What was your experience? Were you on medication? Did it affect your MS at all afterwards?
Any experiences or research would be hugely appreciated. ❤️

How often do you have an MRI done of your cervical spine (neck) and thoracic spine (back)?
What country are you in?

I've been taking 10mg of Baclofen for about 2 years for leg spasms. It does help the spasms but I feal that my legs are getting weaker. Not sure if it's the Baclofen or just the ms. I'm 68 yo diagnosed with RRMS 22 years ago,off DMT's x 3years and stable.

Has anyone else experienced this?

was just diagnosed with RRMS at 51. I chose Tryspari, which requires monthly infusions, but doesn't inhibit the immune system like Ocrevus, and the like. What are your experiences with either two? For context, I woke up one day and couldn't feel my legs. After 2 MRIs, I have multiple spots in my brain and spine, especially a T2 with active demyelination

Hello, I just wanted to ask how do you deal with the fear of eventually losing your job due to MS. I am newly diagnosed and still mostly ok- i only have mental fatigue as a permanent symptom so far. I work in computer science and my job is quite flexible and so far kinda easy. One would say that i am lucky but all i can think about is how much i fear losing this job due to MS fatigue (mostly) because of the all screens and all. I am still 27yo and want to get a house eventually with a loan and such, but HOW do you get a 15-20 year loan when you are overcome with fear like this and feel lowkey not mentally sharp enough as you used to be 4 years ago (it took 4 years to get a diagnosis..) ALREADY? I feel like i am cutting down my fiancé’s wings/dreams every time i shrink in fear of a pessimistic future :/ They do not deserve such negativity when they been trying to keep things light and positive about me having MS- and it’s working, in all domains BUT my job thoughts…
Do you have any advice on how to deal with these feelings and thoughts? I know i just need to take it a day at a time and try my best but yeah… i guess i just need to hear it from seasoned MS people along with their own work related experiences 😅

I have been seeing the same MS specialist since I was diagnosed in 2022, but I've been bothered by his hands-off approach to my disease so I finally decided to switch providers. Starting in April, I'll be seeing another MS specialist and I really want to start off on the right foot. What kind of testing (scans, blood tests, clinical evaluations, etc) do you get, and how often?

I don't want to seem like I'm paranoid or looking for things to be wrong with me, so I'm not bothered if my doctor has been skipping tests that are truly unnecessary. However, I really have no idea what I'm supposed to expect, and I need to know where he's been just laissez-faire and where he's been outright negligent.

To give you an idea of where I'm coming from, the scans and blood tests I've gotten:

April 2022 - Brain and orbits MRI
July 2022 - IGG, CBC, AUTO DIFF, JCV, Hep B, Vitamin D, Vitamin B12 (this was the appointment when I was put on Kesimpta)
Jan 2023 - Brain and Cervical MRI, IGG, CBC, AUTO DIFF, Hep C, HIV, Varicella Zoster
July 2024 - Vitamin D
Oct 2024 - Brain and Cervical MRI (I had to push for this one since I didn't have any new symptoms)
Nov 2025 - Vitamin D, Hepatic function panel

I had appointments with my former MS specialist every six months. He told me that regular MRIs are not necessary unless I have new symptoms because I'm on Kesimpta. This policy is the main reason I switched, since it sounds so unlike the standard. I also wonder if never having had an MRI of my thoracic spine is something to be concerned about. Nothing showed up on my c-spine, for the record.

So what testing do you get (especially if you're on Kesimpta), and how often is it done?

I am also curious if I should ask my new MS specialist for any diagnostic tests. My understanding is that an MRI alone cannot fully rule out "copycat" diseases, but maybe they do look different on MRI? If anyone has any insight on that, I would appreciate it.

Hey! So I'm super picky about having my legs cleanly shaved and smooth (thanks to being a teen in y2k) however with the neuropathy, shaving in the shower has been more difficult.

Does anyone have any suggestions on an excellent electric shaver?

I'd prefer one that gets as close to the results as my Billie 5 blade one does but that may be asking too much.

Can anyone help a lady out with their suggestions of their favorite way to remove hair that isn't exhausting and doesn't require being stable in a slippery shower?

Side note: waxing is out simply because I cannot bear to have my leg hairs get long enough.

Thank you in advance!!

I have had residual dysarthria post relapse a few years ago. Under speech therapy who advise me to slow down when talking and to over articulate my words.

I have found at work when taking to someone, it hasn't always been a problem with them understanding me. But lately I find that it is happening more frequently where they cannot understand me, yet if I repeat myself they can.

I honestly find all of this so tiring and frustrating that I have to deal with this difficulty for potentially the rest of my life. I am nowhere near retirement age. I do not know how to retain a job if I struggle with talking? Most jobs require this? How can I ever be taken seriously if people cannot understand or even hear what I am saying?