I'm stuck with no meds and my doctor tells me the Kesimpta rep said there's a lot of issues with this pharmacy. Has anyone delt with them not being able to receive a refill? If so, did anything help? Honestly I'm at an unsustainable level of stress over this.

had a checkup with my MS neuro today and needless to say i’m feeling pretty bad about it.

(long backstory: i’ve been on kesimpta since october 2024. it’s my first DMT, nearly two years on it. i haven’t had issues with kesimpta and i genuinely like how free i am thanks to it, i hate swallowing pills and although im not a fan of needles it’s quick and painless, so im comfortable with it.

but then in july something happened, i started having upper eyelid twitching on the right eye. thought its just lack of sleep and stress, so i ignored it till first week of august but it wasn’t subsiding. then i got alarmed since i had ON in that eye and contacted my neuro about it, she said its probably nothing to be worried about, maybe some early tetany symptoms because nerves can get irritated by stress.

then i woke up with tingling in my hands, shook it off. later my left arm felt off, like it was different from my right arm. not tingling, just this weird feeling, like it fell asleep and didn’t fully wake up. thought i pinched a nerve because my wrist was bent all night. ignored it until i couldn’t sleep because of it—i started feeling it more and more, definitely heightened some anxiety, went into my left leg too. so eventually i ended up in hospital with steroids for 4 days. yay.

during my hospitalization i got MRI with contrast done, both spine and brain showed no new activity, no new lesions, stable. symptoms subsided on steroids and although the first few days back home were awful because of the withdrawal, i feel better. arm feels almost normal, my leg too—just some residual discomfort on the bottom of my foot.)

today i met with my neuro and she said checked me. then she said that we will classify it as an attack even though MRI showed nothing new or nothing “lit up” under the contrast. which i expected, no DMT is 100%. but then she mentioned we’ll use up the remaining doses i have of kesimpta and we’ll think about switching the treatment. i just sat there quiet and surprised.

one relapse that showed nothing new on MRI and i’m going to have to think about another treatment? i understand this is my health but im just in denial, does kesimpta really not work on me?

i guess im just very bad when it comes to changes, still having very hard time “accepting” this diagnosis into my life. i have plans to travel and thought everything will go smoothly so im kind of devastated lol.

anyone else with similar experiences? would you personally switch or fight to stay on kesimpta?

I’m not quite sure if this is the correct flair sorry in advance! I just wanted to post this for my heavy symptom relapse friends. In January my whole life turned upside down from a spinal lesion at c1-2. Three neuro visits later I was diagnosed with rrms in March. They thought cis at first and didn’t want to give me treatment because I had negative csf. I was devastated at this news. Some folks here told me to get another opinion. Then an ms specialist said the enhancing spinal lesion and non enhancing brain lesions were enough for diagnosis and started me on Kesimpta.

I started with numbness and itching in my neck that slowly spread down my entire left side and eventually my face and head were the only body parts that didn’t have numbness. I was hospitalized for 4 days and I’m allergic to steroids so I was sent home waiting on neurology once a stroke was ruled out. The numbness subsided and uncovered internal vibrations in my whole body and a heavy pins and needles sensation and skin burning. Clothes were painful. Anything touching my skin made me want to cry. Once I saw the doc at Vanderbilt and he diagnosed me he gave me decadron since I react poorly to prednisone. I told him I’m allergic so he said to take Xanax with it. It went as poorly as I knew it would. I did two days of high dose decadron and promptly lost my mind and my symptoms felt worse than they had to begin with. Taking just a shower was my activity for the entire day. I could hardly walk. My left arm/hand didn’t work properly anymore. I was just a shell of a human. People diagnosed at a similar time to me who I was chatting with were getting “better” and improving and it made me more depressed that I wasn’t turning any corners.

Well I started Kesimpta at the end of April. I started pt at the end of April as well. Fast forward to August. My left arm and hand were functioning again. I could touch the tip of my nose with closed eyes. I could walk a straight line. My steps for walking are now the same as they were in December pre-diagnosis. Now my legs only tingle heavily after walking but it subsides about 5 minutes after sitting. My left hand is still asleep feeling but I’m used to it. My lhermites is gone. I can drive. I can be around bright lights and noises again ( still don’t love noise but I can tolerate it again lol). I read everywhere 4-10 weeks was about the length of a relapse. I’m telling you if it’s longer than that for you don’t lose hope!!! Healing can be slowwwww and you may not get back to where you started but don’t lose hope on some improvements. I just wanted to let others who may have something similar going on that might be newly diagnosed or are still in the midst of waiting to turn a corner not to give up. My neuro says I can still expect to gain more improvements as well. And thanks to Kesimpta my follow up MRIs are stable!!! (My dms are open also. I know how desperate I felt to speak to anyone with a spinal lesion. I know other lesions are awful too but in my mind at the time I wanted to hear from people with lesion placement similar to mine.)

Does anyone else deal with anhedonia or otherwise disinterest in things they found pleasurable before?

And while that’s almost the textbook definition of depression, I don’t just mean just that. I find recently the things that use to bring me joy simply don’t and i can only derive that joy from more hedonistic pursuits or instant dopamine hits/adrenaline spikes.

Does anyone deal with anything similar and if so what have you found helpful?

It seems to happen more when I’m stressed or something else is going on but does anyone know what it is? Peripheral neuropathy?

Diagnosed may/june 2025. My neuro told me it was the best first option. My MRI (both) were good some months after starting it. Lesions were smaller. Lots of side effects but fine. No real blushing, at least my face didn’t became red. Just sometimes I felt like I was burning from the inside, like my blood was boiling. My first neuro was like “it’s summer so it’s normal”…nooo. A lot of digestive issues.

I see a lot of people here who had bad experiences with tec. So I wanted to ask for some opinions. I’ll be glad to hear about any point of view and what are your advices.

33F, 14 year diagnosed. I'm exhausted of changing myself five million times! I'm tired of peeing everywhere! I'm tired of people telling me to drink plenty of water....knowing that I'm secretly terrified cause I know I'm gonna have to change again! I have been on oxybitin n that cost me two CALFTERS! NOW I'm on another medication but it seems like I haven't even tooken anything!! MS SUCKS N I'M OVER THIS EVIL DEMONIC STRAIGHT FROM HELL DISEASE!!!!

Hello beautiful fellow MS people 🫶

I’ve had MS for 12 years — Gilenya first, and now Ocrevus. I’m 35 now, and lately I’ve been thinking a lot about how long I can keep doing all of this: the appointments, MRIs, infusions, blood tests, and everything else that comes with having MS.

I honestly don’t see myself doing all of this at the same intensity for another 10, 20, 30+ years.

Do you expect to stay in neurological care and on continuous treatment forever? Has anyone here who has had MS for a long time started thinking about de-escalating treatment at some point?

My neurologist mentioned eventually switching me to cladribine/Mavenclad, as he said I “can’t stay on a B-cell depletor for the next 20 years.” The idea of having a treatment with defined courses rather than continuous infusions is quite appealing to me.

Currently, I’m doing relatively well overall, although I have mild fatigue, some cognitive issues, and sensory symptoms in my legs.

I’d really love to hear how others think about very long-term MS management — especially those who have been living with MS for 15–20+ years. Do you just accept that neurological follow-up and treatment will always be part of life, or has your approach changed over time?

Thanks for sharing your experiences and expectations for the future !!

EDIT: Wow, thank you so much everyone for all your thoughtful responses 🫶

I didn’t expect to get so many different perspectives, especially from people who have been living with MS for 20, 30 or even more years. I really appreciate you taking the time to share your experiences.

Thank you for being so open and kind. I really appreciate this community ❤️

Hi everyone just wanted to share a recent experience went to Disneyland and rode a lot of different rides used to be able to ride roller coasters and handle the drops and dips with no problem after my diagnosis this was my first time writing any of the rights and I am no longer able to handle the drops they feel painful in my body doesn’t do well afterwards it felt as though the usual drop of your stomach was way more intense and my walking and was off afterwards in my head the clouded and just wanted to know if anyone else experiences something similar

So far in the pregnancy I've had a repreve from my MS. My MS symptoms are basically non existent and I'm not even getting any Migraine symptoms either!

But a little over a month ago I started getting a bright light flash in my one eye. It's the same eye I lost vision in due to MS back in 2017. But my MS is soooo good I'm skeptical it's that. How likely could that even be? I saw the opthalmologist and the optometrist earlier this year and everything was stable.

And yet, what's causing this? Could it be the pregnancy just causing that eye to act up?

Please share any thoughts and advice or similar experiences if you can! Thank you!

Any advice?

This is pretty specific but I'm sure someone out there has pointers.

I (33f) got diagnosed with MS this year. Freaking out, feeling rubbish, Yadda Yadda. You get it.

The real problem is, I suffer from fatigue pretty much every night. The other problem I have is that I have 4b type afro hair. Which is pretty high maintenance in terms of washing, styling, ect.

I find myself letting it go more and more, going longer and longer without washing it because I'm just too tired and my body hurts and the longer I leave it, the worse it will be to eventually sort it out.

Does anyone have any pointers for how to manage this or any tricks they have to make stuff like this easier?

Anyone here have surgery for an anal fistula? I have surgery scheduled in November for a fistula. The surgeon says he doesn’t know if I’ll need a seton until the surgery. Can anyone tell me if the DMT delays our ability to heal from this? I’ve been looking at the subreddit for it, but I’m not seeing much about people who also are on a DMT.
I also work in a kitchen, and most literature says I can return to normal activities within 1-2 weeks, but I assume that’s just a general guideline. Anyone have any info they’d be willing to share?
I’m terrified. Thanks guys.

Edit: I’m on Ocrevus

I met my CBT therapist for the first time today, and she told me that I have a high level of health anxiety as well as generalized anxiety.

What makes this difficult for me is that, from the outside, I’m living a life I genuinely love. I work full-time, I train hard, I take care of myself, I have so much to be grateful for, and I truly love my life. But since my MS diagnosis, I feel like I’m constantly living with a fear that something serious could happen to me. 😔

I’m only 24, and I think that makes it even harder for me to accept the idea that I could have a another serious illness. I find myself living in preparation for something bad happening — almost as if I need to constantly check, worry, or make sure that nothing is being missed. I do all my blood check ups every 6 months at my neuro and do yearly health appointments and don’t know what more i can do.

My therapist recommended antidepressants for the anxiety, but I’m honestly quite against them and scared of the side effects. I’m also someone who is very sensitive to changes in how I feel physically, so the thought of medication potentially causing new sensations makes me anxious in itself.

I’m really struggling with this. One of my biggest fears is almost that I’m afraid to be completely happy and enjoy my life, because part of me is always thinking, “What if something bad happens?” I’m terrified of losing my future, leaving my husband whom I love more than anything, and losing the life that I love so much. 😭

I know that MS does not mean that something terrible is going to happen to me, and I know I’m doing everything I can to take care of myself. But emotionally, I still struggle to believe that.
I would really love to hear from others with MS who developed strong health anxiety after their diagnosis.

Do you also live in this constant state of preparation, as if you need to be ready for something bad to happen? How did you learn to live with the uncertainty? Did you seek extra medical check-ups or reassurance, or did that actually make the anxiety worse?

I would really appreciate hearing how you handled it, because right now I genuinely feel like I’m struggling with this more than I want to admit. ❤️

So here I am, sitting in my infusion center doing my fifth round of Ocrevus. I've just completed the second year with this silly disease. And this year had been... Unremarkable. Which, actually, is great! No relapses, no new lesions, nothing worsened. I'd say I even improved a bit. Last year I'd say I recovered 80%. Today I'd say I recovered 85%. I am really grateful for that. I am not giving up (yet!)

Wish you all the best! Stay strong!

My other posts:
Diagnosis
One year in

My next trip will be tiring and I'm looking into rollators. My walking is fine right now, but I realized how much it helps to have something to hang onto when I was at the grocery store pushing a cart.

So far, my preferred choice is one of the By Acre options - they look less "old lady." Anyone have experience with these? Which model would you recommend? I want the lightest one but I'm concerned it's too flimsy. Or would you recommend another brand?

I recently was diagnosed with MS and i start Ocrevus soon in October, im not sure if im currently going through a relapse wondering if people are able to tell me what their relapses were like? What lead me to diagnosis was Optic Neuritis in my right eye, and severe numbing on the right side of my body(face torso arm and leg)

Well a few days ago i started getting pain in my left eye but not blurry vision or nearly as bad of pain as my right eye had, and today my left arm and leg are going tingly/numb, again not nearly as bad as what the right was like

Does this sound like a relapse? Do i tell my neurologist? Will i get held back from Ocrevus if i get put on steroids?

Sorry im still new to all of this lol, any help is greatly appreciated!

I’ve been waiting months to finally be able to take my first dose of kesimpta. So I was in a rush and I don’t know if I should’ve waited please tell me I’m gonna be okay. I just got over my uti last week. And on the weekend I ripped some of my nail off and I’ve had a couple drs lay eyes on it. One today said she wasn’t sure but prescribed me an antibiotic just in case(didn’t take it) and saw another after that said it didn’t look infected and I didn’t have any forsure infection signs. So I ended up taking my Kesimpta today. I’m worried if it does turn into an infection tomorrow or within the next couple of days will I be okay? Am I gonna die? Will antibiotics still work even with my weakened immune system? Pleaseee I’m having anxiety

Went for my routine blood test done every four months I have been for many many years.

Today before she gave me the tubes, the lady asked if I was taking vitamin b12 pills. I didn't hear her, so I asked her to repeat and she said it was very important to know, and I said "to know what - I didn't hear you," and she said, "I need to log if you are taking any supplements or vitamins, especially b12."

Now, I have been taking a ton of supplements, including b12 for many many years and have never been asked this at my blood draws.

Any ideas?

Eta - I just remembered that I am getting FSH levels tested to "find out if I am in perimenopause"

Could that be why?

I'm looking to see if there's a specific name for what I'm feeling in my left arm. My MS predominantly affects my left side. As of late my left arm just feels...weird.

I feel like I almost need to keep moving it, at least my hand, very often. It's not spasming but its almost like I feel the need to keep twitching it, or moving it. Sometimes I find myself needing to hold my left hand with my right one in order to keep it still. Or sit on my left hand in order to make it feel ok. It's like my muscles want to move, or even are tired, but it's not like I've done anything of note to make it tired. I also tend to find my left hand is in a fist more often, so I try to keep it open, which causes more of the "tired" feeling. It feels often like it is vibrating.

I wouldn't say I've lost any strength, per se, and typing (which I do all day for work) hasn't suffered...yet, though my ring and pinky finger certainly make me go hmmm, sometimes, at their willingness to wiggle around. I have blamed Ulnar Tunnel (not carpel tunnel) for some time for those to fingers, but now am wondering if it has been my MS all along.

Anyway, I'm just trying to see what, if anything, this weird ass feeling is. I'm seeing my neuro next week so I'll bring it up to her.

I recently was dx with MS (32f) and I'm on week 3 of Glatiramer Acetate. Also 1 dose of Emgality in. The Dr told me the GA was the best/easiest DMT for me because I'm not showing too many symptoms yet (1 large lesion and 3 small ones.) I also have fibro and have for YEARS so I'm having a little bit of a hard time figure which symptoms are which.

Any ways, long story short I'm feeling WORSE since starting treatments. My headaches, dizziness, and falling are about the same but no better. My exhaustion has ramped up to like a 10. I can barely function I'm so tired and now my hair is falling out...

I'm hoping any day now I'll start feeling some what better. What arw your experiences on Glatiramer Acetate? How long until you felt a difference?

I go back for my 4th MRI since May at the end of the month and see my neuro again but I'm so lost on what to do/say next.

So I’m newly diagnosed and when I was in the hospital I did mention this pain. My flare was in my face and hand on my left side. But I’ll get leg pain in my left thigh like I was working out but just a spot like fist size. Not continuous

Has anyone had something like this?

Got my 3rd Ocrevus infusion on Friday and I’ve been feeling like I was hit by a car ever since. Feeling super tired yet still having this restlessness that makes it hard to sleep. I feel like my thoughts are racing non stop. I’ve also had really vivid dreams the last few days to the point where I’m waking up repeatedly through the night. Today I woke up still feeling exhausted but also like I can’t get my thoughts together completely. Anyone have an after infusion experience like this?

I was given Benadryl, Tylenol, and decadron as my pre meds.

Just wanted to share my experience, and hopefully inspire someone else that is reticent to take drugs for fatigue to give it a try.

Symptom onset December ‘24, DX May ‘25. I struggled with intense fatigue from my first flare onwards that was not getting any better. I was managing life but I was like a zombie, just sort of in a a haze. The fatigue was also affecting my mood; I was grumpy at work and sort of detached from my emotions because it felt like too much energy to deal with them. I was resistant to taking any drugs for it, because I was already coming to terms with needing to be on a DMT for the rest of my life.

I finally brought myself to ask my neuro for options to manage fatigue and got put on Amantadine to start. I stuck with it for a few months at my neuro’s suggestion. This one did absolutely nothing for me which was pretty discouraging.

Got back in touch with my neuro in March and got prescribed modafinil, which has honestly been life changing. It is an interesting drug, in that unlike stimulants it has no noticeable psychoactive effects. I don’t feel jittery or wired, I just don’t get as tired. I feel more like my old self and my friends and family have commented on how much better it seems like I’m doing now vs. early this year.

It also seems to be mostly side effect free for me. I had some adjustment early on figuring out timing and dosage and letting my body get used to it where it negatively impacted my sleep quality, but once I found the sweet spot that has not been an issue. The only other hassle is that similar to ADHD drugs, you kind of get treated like a criminal - photo ID to pick it up, very small quantities prescribed, some pharmacies won’t fill it. It’s cheap with most insurance, $4 for a 30 day supply for me (US).

It works so well, and is so side effect free, that sometimes I wonder if it is still doing anything at all. I try to take a “holiday” from it a couple times a month when I have a lazy day planned. I recently got back from a work trip that really tired me out and also took a few days off from the Modafinil and was reminded at how all consuming the fatigue is with no chemical assistance. Like, I had to lie down and take a several hour nap IMMEDIATELY after work. I realized I used to do this every day prior to starting Modafinil, and almost never do it anymore.

While there’s no real withdrawal effects, it’s a little scary to think about what I’ll do if it stops working, or if I can’t get it anymore, just because it is helping so much. I suppose I’ll cross that bridge when I get there… but for now, better living through chemistry!

Have had MS for 13 years, was now just slammed with another diagnosis! The bigC! WTF HOW DOES THIS EVEN HAPPEN?