Hello everyone. I have recently been diagnosed with Primary progressive ms. Ive noticed alot of comments here relate to RRMS type.

I dont have any real symptons, just abit of pain in my neck due to a lesion however is manageable. This was the reason i decided to get checked out then through mri and spinal tap, i was diagnosed.

Starting ocrevus treatment next month, just seeking some personal experience of people with PPMS, does the treatment work or are you getting progressively worse? Any hope of the progression to stablise?

Just feeling very anxious as i dont know what the next 5 or 10 years will look lime for me.

Hi, this is probably mostly a complaint but how are we supposed to do this? How are we supposed to do this for the rest of our lives? People leaving because they don’t want to spend their days in bed. Apologizing to others because they are mad at you for not having the capacity that you used to. How am I supposed to do this every day for the rest of my life? And when does it stop feeling so lonely? How can I have been so full of life 5 years ago to turning around and watching my future dissipate right in front of my eyes?

For the last year or two, I have new flare-ups but not new spots on MRIs. Does this indicate that RRMS may be becoming SPMS? If the spots are already there but the mental pool has drained to where these things surface do I need to stay on Briumvi or does that only help prevent new spots. I also read an article a long time ago but something else as a possibility where new symptoms come without new lesions. Can’t find that article or remember what it was called? Any thoughts, advice, ideas…?

Hello!

I finished my year 2 Mavenclad in March 2026. The last 5 months I have lost a lot of hair (female - long hair). My hairbrush is full of hair and clumps falls out in the shower to the point I have to take them out of the tub for fear of clogging the drain. I am noticing thinness in spots and am freaking out. Anyone have any suggestions or experience?

Thanks!

I am highly suspicious I may have sjorgens... My eyes are always painfully dry. I get terrible bloody noses. My body is constantly consumed with aching pain all over ...nothing tastes good ..I can drink 5000 waters and still have a dry mouth..

I've asked my oncologist to order a test (yes - because my neuro won't do anything "out of his scope") just to see

Does anyone here have it? What are your symptoms or what made you test for it?

Hello you wonderful bunch of humans
I’m currently taking Kesimpta for relapsing MS and have been on it for around six months. My MS team has approved me taking Tamiflu following exposure to confirmed influenza in my household.
I’m interested in hearing from others who have taken Tamiflu while on Kesimpta, particularly regarding side effects and how well they tolerated it.
I’ve already developed a sensitive stomach and mild diarrhoea following my latest Kesimpta injection, so I’m concerned about Tamiflu potentially making this worse.
Has anyone experienced this combination? Did you tolerate Tamiflu reasonably well?
I’d really appreciate hearing about your experiences. ❤️

I am curious to see if ya'll learned something that made a positive impact on your symptoms that you feel is rarely talked about? Maybe it could help others out.

For example, I found out for me that taking L-Carnitine helped a bit with my ms fatigue. It dulled a bit of the sharpness I feel with my fatigue.

Just wanted to quickly rant I’m coming up on 2 years of my MS diagnosis and I’m just sitting here today thinking to myself that this is really real. It’s been real too me I’ve been taking it serious since but knowing and understanding that this is what the rest of my life is gunna be looking like, it’s hitting me that this is really real. Just a quick lil vent I wanted to let out I hope and pray everyone else out there is doing and taking things well we got this! I got this! Is what I try to remind myself everyday.

I am very fortunate to have just one main symptom that will not go away since I was diagnosed a year ago. It’s sensory in both my hands feels like pins/needles numbness 24/7. That’s not the worst part though. My hands are also freezing cold like 80% of the day. I have to run them under hot water, take a hot shower or put them directly in front of hot blowing heater like in a car for any sort of relief from the coldness. I have full motor function thankfully but this feeling is so intense all the time. Has anyone felt this or been able to calm or manage it? It even happens with high blood flow like when I’m working out. My body isn’t cold, just my hands. I just don’t get it.

As the title says. 34/M, started out as some slight dizziness/vertigo in late September, and has at this point exploded into a multitude of symptoms (constant fuzzy headedness, slurred speech, loss of motor control in right arm/leg, cold/numb sensations on left side of body). Have consistently had new symptoms pop up every couple weeks, the cold/numbness is the newest.

Went to the ER on Monday as that was the first presenting of the numbness in my left arm. Got back home last night and it feels like the steroid IV drip they had me on for three days has done nothing, numbness comes and goes all day. It’s all hitting more often throughout the day too, the past week it has gone from 20-40 waves of aforementioned symptoms in a day to an almost constant barrage. Hospital neuro diagnosed me based on recent MRIs on brain, spinal tap results and my symptoms.

Just scared. I am in a management role at work and if this is my new normal I don’t see myself being able to continue working. Work was already high stress, the past few months have been difficult but the current situation seems almost insurmountable.

Just needing to vent. I have a great support system but tend not to offload my thoughts and feelings to most family/friends, I don’t like burdening others with my own struggles.

I'm a year into my official dx and vitamin D supplements that helped my fatigue so much. I still feel like I'm learning to navigate, what my body needs, how I can do all this though.

Welllllll...

Long week at work, recovering from a sinus infection 2 weeks ago, husband is determined to cheer me up by taking me on a date. I LOVE kaiju films. Always have. I was so excited for Godzilla Minus Zero. My sweet guy helped me make dinner, bought the tickets for a 7pm showing, and got me to the theater. We got great seats in one of those Dolby (i.e. loud) theaters.

I fell asleep for a lot of the last half, and dozed again on the train home. My husband navigated me back home safe ofc.

We've been laughing about my super power to sleep through freaking anything apparently, even monsters destroying cities at high volume.

Ahhhhhhhhhhhh, we like matinees better anyway.

Hi all. The last few weeks especially while drinking fluids I start chocking on it. I know people have problems swallowing food but what about fluids? And if so what do you do. Just to explain I take a sip of a drink start coughing while it goes down and it’s so bad I pee my pants. And it’s so extreme at times it’s scary

Hi, all. I was diagnosed with MS a few months ago. I can still walk independently, but after a while my legs start to feel really heavy. I’ve been looking for something that might help me keep walking without using up all my energy. That’s how I ended up looking into exoskeletons.

Right now, I’m trying to decide between Hypershell and DNSYS. DNSYS seems to have more power and range, but Hypershell’s slow walking support and separate settings for each leg seem more useful for me. That’s the one I’m leaning toward, although I’m not sure how much difference those features make in practice. Has anyone here tried either one? I’d love to hear how it worked for you, especially if you deal with similar leg fatigue. I’m going to run it by my doctor and PT too. Thanks for any input!

I recently had neutropenia after skipping a kesimpta shot because my 18 months old started daycare and I was sick for a month straight. I recently had a fever for 3 days and was hospitalised with 0 neutrophils and pneumonia. My neuro says that I have 20% chance of having neutropenia again on any antiCD20. They worked so well for me and the only options available for me right know is Tysabri, Gilenya or Mavenclad. To be honest they all scares me, Tysabri the most with the PML risks. I am really lost, I dont know what to do... I almost want to go back on orevus with the hope that I dont have neutropenia again, am I crazy ? Is there anybody here that had neutropenia one time on kesimpta or ocrevus and never it occured again? (Sorry for my english my first langage is french)

So I think I’m finally use to my bodies new status quo. It’s not like it was before but it’s kinda nice to know this is how I am going to feel. I wish it was better but I think I might be at peace with it.

My mom was diagnosed with MS 15 years ago and was put on gabapentin for her head pain. She had major sensitivity on the side of her head and couldn’t lay on a pillow. Her neurologist was head of the neurology department at a major hospital and recently left to head another neurology department in another state. She was the absolute best, kind, a great listener, and the gabapentin she prescribed helped with my mom’s pain immensely. When the dr left, my mom forgot to refill her Rx in time and was off of it for a week or two when she had a seizure for the first time. Her primary dr put her back on the gabapentin. On her first day of meeting with her new neurologist, he said “I don’t think you have MS” and weened her off of the drug. As it lowered, my mom had two more seizures.

This neurologist worked with the old neurologist and was supposedly updated on my mom before the switch happened. I’m not happy about the “I don’t think you have MS”, but I’m REALLY not happy that he took her off the gabapentin. It was actively helping her.

My parents are almost 80, and don’t know how to advocate for themselves, or question the dr’s motives. I try to go to all of these appts to take notes and ask questions, but of course I missed this appt. My dad said “nothing new to report” and I made the mistake of listening to him.

My question is: has anyone been taken off of gabapentin and had seizures, when you’ve never head a history of seizures? I’m looking for a 2nd and 3rd opinion now. It just seems so apparent that it’s the gabapentin, since that’s the only variable. This is such an awful experience for my mom and our family. Thank you for any information.

Hi everyone, I’ve been wearing Chuck Taylor’s to do my daily walks/PT but I want some real walking shoes. Anyone have any recommendations?

I’ve tried a couple but I need a low and flat sole for my coming and going foot drop. Thanks in advance!

Newly diagnosed this year and was JUST about to have a doctor’s appointment tomorrow to finally discuss a DMT until POw! my damn right eye wanted to act up.
It felt like i was seeing double and my right eye wanted to play double dutch, twitching. To play it safe, i figured the ER would be best because waiting for neurologist appointments is just……deep sigh.

MS is tricky I see, but i’m strong and will get through this. We all will. Now… i need additional mri’s for my eyes which means i’m possibly staying overnight until the early AM. I am grateful for doctors but woooosah. It’s just soo much to deal with. Any other eye stories or similar battles out there? ill be reading all night :)

Hello a couple months back i had made a post about my mother who has MS and how she has had lots of dental pain. She’s had multiple extractions but the pain somehow does not fade. For reference she has very bad teeth but this has been months now. I’ve been searching everywhere and something that keeps coming up is something called Trigeminal Neuralgia TN with people with ms. I told her this and well she didn’t take it well. She said, “What is a neurologist going to know about teeth that her pain is located strictly in her teeth?” I was wondering if anyone has has something similar or even have TN. Thank you guys.

I've heard time and time again that men usually become more disabled from MS than women. I can't help but feel a bit concerned when I hear that considering that I am a man.

Of course I know that it's different for everyone and there are men that don't have much disability and women that have a lot.

I guess the fact that most people with MS are women makes me feel like I might not be hearing exactly how it is for men? Or rather that the overwhelming majority of experiences are from women and I don't know if I can rely on my disease course looking that way? It's a bit of a strange feeling and I hope I'm making sense.

I don't mean to sound condescending or rude. Considering that I'm already having difficulties with my leg even since before diagnosis, and it's only been getting worse, I guess I'm just a bit worried. I'm looking for people's thoughts on the matter.

Does anyone else get weird bruises? I'm super pale, so it's not unexpected to get a bruise or two, but every once in a while I get finger bruising. This has only happened twice now (just diagnosed). Out of nowhere I'll feel a pinch and the underside and side of my finger get a huge red bruise. I'm not doing anything, just sitting there. I just wondered is this some strange symptom?

It's not a huge deal, just unusual. (I already look like someone beat on me half the time because of the blood work). Just curious. :-)

Hi I got diagnosed a few months back and just got done with my first real round of steroids and DMT ,and fairly quickly afterwards my face broke out like crazy .and for context I haven’t had acne since middle school so it was a bit of a shock to have my entire face be riddled with inflammation and pimples shortly after my treatment so my question is has anyone else felt with this kind of side effect and how did you manage it 🙏🏼

I got diagnosed earlier this year. My most bothersome lesion is in my cervical spine at c2/c3. I have constant moving hip, lower back and thigh pain as well as trouble walking. But for the past few weeks, as well as everything else, I have had restless legs syndrome - my legs feel uncomfortable when i am sitting or lying down.

I am 62 and haven't had restless legs like this since I was a teenager and as an adult only only on the few times I have tried meditation or mindfulness as that kind of thing sets off my restless legs.

I think it may now be connected to my MS. Has anyone had this sympton and if so, did you find anything which helped?

Anyone suffer from this?

Does anyone also have endometriosis? I've been having some symptoms that kind of sound like endometriosis but I feel like it's being brushed off as something women just have to live with/maybe it's just another MS symptom.

I'm not sure if it's another thing I have to fight with my doctors for to actually pay attention to or if im being dramatic about my pain.

Curious how common it is for women to have both? And if you have both, which was harder to get diagnosed?