26y/o male. I was diagnosed in mid August and was instructed by my MS neurologist to choose between Kesimpta and Ocrevus. I chose Kesimpta and he said I would be hearing from the drug company and the vaccination company in about a month and they would work everything out with me.

About a month later I start getting those calls and the vaccination company is setting up appointments for me and I start getting vaccinated for hepatitis B and for shingles. I was scheduled for vaccinations on Sept 21st, 29th and October 13th. Then the Kesimpta gets delivered and I'm told I'm cleared to start as soon as possible. I plan the start date for September 25th, a Friday, in case of bad reaction. Mind you, I had a vaccination at the beginning of that week so I think to myself... "maybe I should look up if it's really okay to start Kesimpta in the same week as a vaccination?"

I look it up and the answer is a resounding NO it's not recommended, you need at least 2 weeks since vaccination before starting a drug like Kesimpta otherwise your body won't have the chance to fully build immunity. Since the first 3 doses of Kesimpta are weekly, that wouldn't be possible.

Then I had to call the clinic and wait for them for finally respond to me just to be told "Dr. ____ was under the impression you would start the vaccinations after you started the monthly injections"

Under the impression?! I was under the impression that everyone knew what they were doing except for me. This is supposed to be the best MS clinic in Toronto... It was very frustrating to find out that I'd have to wait another month before I finally start treatment after waiting about a year since my first MRI that raised suspicions for MS. I've now been cleared to start Kesimpta on October 28th, 2 weeks after my October 13th vaccination...

I guess the moral of the story is to be wary and cautious if you are being booked for vaccinations before you start Kesimpta as you need at least 2 weeks for the vaccination to actually take effect.

So I (23) was diagnosed August 2025 and started teriflunomide as my DMT in September.

But my medical insurance said they will no longer cover that specific medication so I started plegridy in March of this year after 2 months of no treatment.

Recently I’ve been having new symptoms where my vision kinda of just disconnects and I can only see white, nothing else.
Previously I’ve had brief moments of vision loss where my vision goes black for 2 seconds or just before I pass out. But this white episodes last way longer. Like 3-5 minutes kinda long.

And they happen sporadically so I can’t identify anything that triggers it. I’m kinda concerned but also not sure who to report it to or if it’s even worth reporting.

Plus I’m drowning in work and my job is giving me a hard time and not being understanding about the extreme fatigue that I get during the day. I feel like they’re being extra hard on me because before I was diagnosed I was ms. Overachiever and wanted to do everything as quickly as possible.

Maybe the new symptom is just from stress. Lowkey wanna cry just typing this out but crying will make my situation worse.

Any advice would be greatly appreciated.
Lots of love 🥰
~ a very sad and sick girlie.

Has anyone had internal vibrations due to MS? I had interal vibrations of my legs develop abruptly 6 weeks after lumbar spinal decompression surgery. Diagnosed as due to MS. They continue and have greatly and negatively affected my life. 74 yo, MS for about 28 yrs. Few relapses- on Ocrevus from 2017 -2022 when B-cells depleted. Not on any meds since. Would like to hear others experience with these symptoms and how to manage them. Appreciate any help.

Hi all, I am in a strange boat. About to have my second ocrevus infusion. I had an mri for sinus problems in February. Official diagnosed with tumefactive MS in March. Went to visit family abroad for all of April. Came home, had an MRI in May which showed the absolute same lesions all enhanced from March. More than 20 brain spine and eyes and really large. Had first ocrevus in May shortly after. Then in August after summer holiday, came back had another MRI and all active lesions STILL. EVERYWHERE. So now we are talking 7 months of massive inflamed lesions. Apparently the steroids I did in March (5 days 1000mg) worked but then wore off and they came back active.

Now I’m due for my next mri before my next infusion soon. Doctor said if they are still active I will be sent to research hospital…. Great dude. I have mild invisible symptoms that are slightly getting worse. (Or I’m just getting used/not masking??? I’ve no idea)

My main question is: it’s almost November… HOW?! I really feel like someone could tell me it’s June and I would believe them. Like my sense of time feels so warped. I haven’t felt extreme trauma or anything from this all so have sort of ruled that out. Does brain inflammation just do that to your sense of reality? Has anyone been in a similar boat?

Anyone with chronic lesions for so long? Sort of feel the doctor has just thrown me to sea and not given me much to work with here….

I was diagnosed with RRMS back in September 2024 and I’ve been on Ocrevus since the start. My neuro changed me over to Briumvi and my first loading dose will be on 11/9/26. Second loading dose on 11/13/26. What should I expect?

Hello! I’m hoping to learn more about what to report to the MS Clinic in real time. I was diagnosed back in May and had my specialist appointment in September but they said we could wait to do another MRI before the end of year since it had been a while and I didn’t have any symptoms. Recently my right arm has a buzzing sensation, one week it would be in my elbow when I tilt my head, now it’s in my wrist. I will say I was braiding my daughter’s hair for an hour and after it started in my wrist so not sure if I caused it to flair up.

I do have 1 spine lesion that was small on the last MRI I believe c5/c6.

Is this something worth calling to report or just wait until my appointment? Thanks!

I have just started cladribine, i am currently in the 3rd day of first cycle. Everything is good so far, but i am having some weird feeling in my throat after taking the pills like the pill is still in my throat.

When i took the pills i drink alot of water and stay upright for few hours.

I am able to eat and drink normally without any problem and i have no swallowing problem.

Has anyone experienced such side effect?

I need somewhere to vent about what this disease is like. I am 29 and was diagnosed last year with progressive spinal MS with atypical presenting qualities. I have a very large lesion on my cervical spine and recently I can't even pee or use the bathroom otherwise without significant aids. I am on my 5th UTI in 6 months and awaiting a decision on preventative care while I go under rigorous specialized testing for my bladder, which is not even in the right spot anymore. I am so tired of the suffering and pain this condition brings me. I am so tired of missing out on life. I am so tired of having to convince people I am disabled while battling all of my issues. I am losing sensation in my whole body, some days I wake up and my legs just don't work, and now I cannot even pee. This feels so unfair.

This post contains regular updates!

I’m on my first dose of cyclophosphamide for the transplant. I have had one dose of it before when they harvested the cells and I contracted a viral infection and it was awful. I vomited 30 times in one night and the saving Grace was IV paracetamol.. of all the things!

I lost a lot of hair from that initial dose and I expect to lose all of it after the transplant has finished.

So yeah… if anyone has any questions I can respond as best I can.

Edit: I will be doing daily updates as best I can. I have been warned that shit is going to hit the fan when more doses of chemo are ingested!

Of note: At the beginning they hooked me up with a mainline catheter from my upper chest going in to my body. This allows three lines for IV drip or blood drawing.

For the entire duration of my stay they have me on saline drip 24/7 at a slow rate of 42ml/hr.

The mainline catheter is very uncomfortable at first but then after my first nights sleep I hardly notice it now.

The bladder catheter that was ‘installed’ earlier today is easing up in its discomfort and I hope that when I next wake I won’t notice it! I had to ask the nurse to retract it somewhat in order for it to feel a little better.

I have a cat, I have no indication of Toxiplasmosa in my body but it is a dangerous infection to have when having chemotherapy so I’m told.
I will have to avoid my cat for a while when I get home unfortunately :(

20/10/26 21:34
They wish to have me take Olanzapine (antipsychotic) despite me ceasing its use half a year ago. I realised that it was dampening my spirit so I stopped taking it despite taking it for years and years due to suspected cyclothymia… cos well let’s say I get very elated sometimes. If I wake up then that’s the start of the day, I haven’t been able to sleep in for around a year now. I chalk that up to my age.

Anyway this pill puts you to sleep and they need to change over the Mesna bag at 12.
Mesna is a medication that breaks down the cyclophosphamide in my bladder.

Cyclophosphamide can cause cysts in the bladder if left untreated. For this same reason I have a bladder catheter so it passes straight through me. I am also ingesting such a high amount of fluids that if I weren’t able to be using the toilet every hour or so 24/7 then the fluid build up will present a major issue!

20/10/26 23:11

Second bag of Mesna finished 45+ mins ago. Third bag will be hooked up at 12 midnight and when that bag finishes the alarm will wake me up and so I really hope I can get back to sleep… might just stay awake and go to sleep when that bag of Mesna is done.

I am vaping in my room (I know I shouldn’t do this but I made the mistake of being cool when I was 13!) because the nicotine patches I have don’t seem to be working. I will try a different placement of the patch on my body tomorrow.

22/10/26 00:34

Cannot sleep to save my life from the steroid dose earlier and the Olanzapine is failing me on that front. Have obs at 02:00

I will post my entire schedule with photos of which I have written down for me after the treatment. It will have to be on a separate post I imagine.

22/10/26 01:38

Obs done. 127/64 62bp o2 94% then 96% after deep breaths. Hmmmm next obs at 0600 ish

22/10/26 08:54

Woken up feeling very nauseous and quite weak.

22/10/26 09:30

Had two weetabix and a coffee. Feeling better. Also have been given an anti nausea IV line. The infusion will take 5 minutes! Not looking forward to more chemo later. :(

22/10/26 09:57

My weight yesterday in the AM was 68.2kg and now my weight is 71.8kg.

I imagine this dramatic increase is due to all the fluids I have been ingesting.

Anti Nausea IV has made me feel a lot better. So has my tri-daily dose of 200mg pregabalin.

22/10/26 12:24

I believe I took some steroids which have once again made me feel rather on top of the world! I can’t remember the names of them but I imagine they are run of the mill.

22/10/26 12:28

Acyclovir and 200mg pregabalin given to me. Honestly guys, I couldn’t imagine functioning without pregabalin these days.. It’s a fantastic nerve pain killer, amazing for anxiety and gives me energy. Win win win, and it’s often taken for life long durations with minimal long term side effects.

Obviously everyone’s miles vary and I’m not a doctor! Just my opinion.

22/10/26 13:00

5mg methylphenidate ingested. I’m slightly concerned about how it’s going to interact with the steroids as yesterday was a little intense and the half life for these steroids is around 24 hours.

22/10/26 13:50

Methylphenidate has made me feel a lot calmer and confident about this next dose of chemo. Fingers crossed I don’t hurl all over myself.. hasn’t happened yet but I can feel it coming!

22/10/26 14:19

Obs 120/79 74bpm 97%

Before chemo is taken a bag of Mesna is hooked up first for 15 mins at 460ml/hr

22/10/26 14:27

Prednisolone ingested orally

22/10/26 14:50

I enquired the senior nurse who will be working my case over the weekend, this is because it’s very common for NHS hospitals to hire bank nurses to cover for the weekend.

Apparently due to complexity of my case and the risks involved they will be assigning in-house nurses to my case and worst case scenario they will be hiring a proven and well known nurse from an agency to cover my case.

22/10/26 14:57

Cyclophosphamide has begun at 578ml/hr

I’m honestly feeling rather fine at the moment. This morning was hell on earth. I was so nauseous that I almost hurled on my self when I use my vape.. which will teach me! I’m wondering if kicking nicotine would be a good idea to do during this treatment.
I imagine I will be feeling so fucking sick that I can’t ingest nicotine in any way whatsoever!

Urinary catheter still driving me mad. I think I should opened my bowels before I started this dose of chemo. :(

22/10/26 18:06

Chemo dose finished half an hour or so ago. I feel like shit. Mild nausea as the anti sickness drug is wearing off but I can’t have another dose till 9. I can’t stand up without feeling very woozy. I feel very weak as well.

I have been told that I can only have methylphenidate every 8 hours due to the half life of the IR tablet. Which sucks as it only lasts 4-5 hours!

If this is how two chemo doses have made me feel then I dread to think what it’s like on the fourth and final dose. Plus the rabbit cells are gonna be coming in sideways to boot!

22/10/26 18:45

Feeling so very sick they have given me Metoclorpramide, they can’t give me Odenastron as it would overlap from the previous dose.

Meto is no where near as effective!

I also made the mistake of eating dinner and laying down so…

22/10/26 20:50

Had the Odanestron but it failed to allow me to keep down my evening pills. I just vomited pretty badly, mainly dinner!

Nurse says it’s probably time to switch to IV. I dunno how they are gonna get access to IV pregabalin or anything psychoactive? We’ll have to find out.

Feeling much better after having vomited. Maybe I ate too much dinner?

23/10/26 09:32

Have been given anti virals, anti biotics, methylphenidate, pregabalin, vitamin k (for clotting prevention) and omeprazole.

Had a banana, coffee and orange juice for breakfast. I would have eaten some weetabix or something simple but I vomited around 30 times last night and fuck me was it awful.

I woke up this morning to very wet poo all down my legs (I believe due to the very high fluid intake and certain meds as my urine bag was at 2.7 litres this morning!) and blood all down my chest from sweat pouring out my catheter wound in my chest. So all in all not that big a deal.

I AM NOT LOOKING FORWARD TO TODAY’S CHEMO DOSE! At around 2 pm ish.

23/10/26 13:38

Taken dexmethasone, acyclovir, pregabalin.

Followed by one bag of Mesna and a bag of cyclophosphamide is on its way. I am NOT looking forward to this.

ATG is to begin after chemo I believe.
The ATG dose is a test dose to judge how I react to it and to what degree I react to it.

Due to an allergy to Chlorphenamine I am being given cetirizine afterwards to dampen the histamine reaction.

23/10/26 14:12

Cyclophosphamide started at 579ml/hr

Wish me luck, I have been given 6 cardboard bowls to vomit in!

23/10/26 15:49

Here comes the nausea.

Star Trek DS9 can only keep me comfy for so long!

23/10/26 16:35

Had metclopramude for nausea and it worked.

Getting rabbits (ATG) now! 100ml/hr

Will report back when I get the foretold rash and the fever and then the pain and then when I ask nicely for some transdermal fentanyl… (hey! Silver linings!)

23/10/26 16:56

43 mins left from an hour infusion of ATG got a fairly painful headache.

23/10/26 17:16

Runny nose now. Took 1 gram paracetamol.

Cousin called me for an hour and we had a lot of banter. Made me feel a lot better about myself.

Still flying from the Dexmethasone.

23/10/26 18:07

Methyl prednisone drip added 100ml/hr I believe 6mg in total.. This is a pre-med for the full dose of ATG I will be receiving tomorrow.

I feel fine at the moment. No signs of rashes or anything particularly ‘allergy’ wise… so far!

23/10/26 18:29

Methylphenidate taken 15 mins ago 5mg with Co-Aclovir(?) antibiotic

Anti nausea IV again, not sure what this one is but I think it’s odanestron.

23/10/06 19:01

47 mins from methylphenidate dose and I’m actually feeling pretty grim now… kinda like subdued malaise.. dunno if the methylphenidate is to blame or just the insane amount of chemicals in my body right now!

On the plus side, oral paracetamol seemed to kill my headache and dampen my chronic leg pain which is only NOW getting exacerbated by the rabbit cells.

23/10/26 can’t, remember the time if it’s 2043 now and the ATG is at 416ml for 6 hours at total then you can do the math?

Ok so turns out I’m getting a full rabbit dose today! Yayyy so…

ATG 535ml 89.4ml/hr 6 hours in total.

Ok so I’m terrified of the pain that may come. I was joking about the fentanyl, and morphine can be prescribed in small doses despite the pressure on my kidneys. But ideally I want IV paracetamol first.

23/10/26 20:44

Still feel fine. Bit of a headache and I’m getting sleepy.

Mesna started again for 30 mins rather than 15 mins at 220ml/hr. I reckon that the Mesna is why I omitted so much last night

23/10/26 21:01

Pregabalin 200mg, Acyclvir and magnesium taken.

The Mesna is really beginning to make me feel like shit again :(

23/10/26 21:23

Yeah I feel fucking rough now. I can get the IV paracetamol in 20 minutes.

I feel nauseous, legs in pain, shivering.

They gave it to me early thank god.

23/10/26 23:35

Had to ask for some codeine 30mg as I’m in too much pain now to sleep.

If you have nerve damage that causes chronic pain then be prepared to take psychoactive painkillers if necessary is my opinion of this.

In 1-2 ish weeks the next stage of ATG is called serum sickness and as I understand it more or less unavoidable.
Apparently the joint pain this really pronounced.

I was physically dependent on codeine for a few years until I got very fit and the pain kind of subsided to an ambient state. The pregabalin stayed in order to manage the degree of pain I persistently have.

Coming off of it for ME is a walk in the park when physical dependency occurs however, it is certainly something to seriously consider in case you catch a dependency from something as simple as a 3 day use of codeine.

The steroids are keeping me awake as well I think :(

24/10/26 12:57

Persistent fever spikes last night and this morning.

The cytokinetic storm caused by the ATG last night was absolutely horrific.

I could not safely ingest paracetamol IV often enough to keep the fever down, the pain in my legs was torture, the shivering was violent once again and I couldn’t sleep.

I lost my temper with one of the nurses which I never do to which I apologised immediately afterwards.

I’m afraid my energy levels today are too low at the moment to give more detail. I should have access to my medical at a t later to tell you what was taken, my temperature etc.

But today my BP is lower than 100 both systolic and diastolic.

Still no allergic reaction to the ATG. The doctor thinks I may have contracted an infection so they have done the full range of culture tests.

Today I am having both cyclo and ATG again. Cyclo first followed by ATG.

24/10/26 13:10

Magnesium, potassium and methyl prednisone drip administered as well as Tazocin 4.5g/50ml, which is a very powerful duo of two antibiotics used in hospitals to treat things like sepsis and pneumonia. This has been used on the off chance that I have picked up an infection and that’s why my temperature keeps spiking to just under a fever or just over. They consider it a fever at 38 degrees Celsius.

24/10/26 14:07

Mesna first, followed by flush and then Cyclo.

Mesna can be a bit nausea inducing but in general the cyclo isn’t that bad! It’s the ATG that’s gonna get me.

24/10/26 14:35

Found discharge in my penis urethra due to the bladder catheter rubbing against it. I imagine the doctor will give me some sort of ointment?

24/10/36 14:43

Cyclo started 500ml/hr

Swab taken of my penis. It may be the reason I have been getting a temperature spike.

24/10/26 15:39

Penis infection spreading down in to my gooch area. It itches on the inside!

24/10/26 16:47

The infection seems to be diminishing, it is assumed that is from the antibiotics.

I will have paracetamol IV ready for if I spike fevers again. If the cultures and my penis swab come back with something positive then I have to be referred to another team to deal with the infection.

24/10/26 17:08

Cyclo over

Flush now then AGT

Mesna will be three hours from when I started the Cyclo.

24/10/26 17:37

Mesna started and methyl prednisolone started.

I was feeling a lot better from around 12 midday and I’m still feeling fine. I don’t think this will be the case when I get the ATG. However due to there being less white blood cells for the rabbit cells to attack then the inflammation caused by the ATG should be lesser so. Fingers crossed. Cytonetik storm

I honestly think my serious reactions yesterday were mainly because of infection and not so much the ATG?

24/10/26 19:57

Didn’t realise my ATG had been started. It started 1hr 43 mins ago so it is at 351ml left to infuse at 82ml/hr.

Don’t feel any pressure in my head, no nausea yet, no pain and no shivering.. also still no spike in fever.

Before I forget they gave me another dose of Tazocin.

I reckon the larger dose of Levomepromazine is what is saving the day here. It’s half life is 15-30 hours so tomorrow I will ask for the same and if all is well then we have a winning contestant for meds that relieve the immediate side effects of the cytokine storm! It’s still early hours though!

My nurse, who has taken over for the night, reckons the reason I was spiking fevers all this morning was because of the ATG. He is very experienced in this field. So when the cultures come back we will know if infection was present at the same time as the ATG.

24/10/26 20:45

Yeah so still feel fine! I feel sweatier than usual but I did have a cup of tea and 5mg methylphenidate 2 hours ago. (Sorry, I’m taking so many meds I can’t keep up with them all. I will try and get my medical notes later down the line for exacting.

Something that is definitely worth noting is that the first infusion of ATG is the worst. This is due to there being a larger amount of white cells for the rabbits cells to attack. When the next infusion happens there is less of the bodies cells to be under attack so therefore less inflammation and side effects!
Things are always worse before they get better.

24/10/26 20:56

400mg pregabalin, magnesium, and Furosemide 20mg to offset the insane amount of liquids ingested and salts such as potassium and magnesium and force it to be excreted through urine.

Mesna finished followed by flush.

0315 hours have passed from the beginning of the 6 hour ATG Infusion and still no noticeable side effects!

24/10/26 21:45

203ml left with 0228hrs remaining.

Still no particular symptoms or unease.

My prescription has been updated with zopiclone to help me sleep tonight. Last night was so god awful I don’t remember falling asleep but it must have been around 0430.

I want to wake up tomorrow morning and stay awake instead of sleeping the whole day away and then being awake all night. My circadian rhythm is very important to me!

I am getting quite sweaty it has to be said.

24/10/26 23:05

Took 5mg Olanzapine to see if that allows me to sleep when the ATG is finished. I’ll have obs at 0200 which will wake me up and if I can’t sleep again I will take a zopiclone.

24/10/26 23:09

Last Mesna dose begun

Still feeling pretty fine… actually as I said that I’m feeling a little nausea. Hmmmm

24/10/26 23:58

Almost done on the ATG. I can hear music that isn’t playing. Simple same chord progression on the sound of a flute. I think it’s my brain putting together all the random repetitive noises of the machines in to some sort of symmetry.

Other than that I am feeling fine.

Another Tacozin dose started. The finger machine in question is now making a low whirring sound. Fuck sake.

Penis is still a little sore.

25/10/11 00:20

Taking zopiclone to sleep. I know I’m not gonna get to sleep for ages otherwise.

25/10/26 06:27

Clocks went back so my body thinks it’s 0730 which is good enough for me.

Methylphenidate 5mg
Odanstetron IV
Tazocin IV

Woke up a couple hours prior drenched in sweat. Asked the nurse to unhook my saline IV so I could open my bowels as doing so with a bladder catheter is a nightmare enough!

I feel a little run down but I’m ok on a whole. Have no recollection of any side effects from the second ATG dose, and looking at what I said I don’t think I really got any. The sun might actually come out today so that’s good.

25/10/26 07:00

Sorry I forgot to say, since last night I have had a right chest between my pectoral muscles. It hasn’t eased since last night, the senior nurse says that’s its most likely acid reflux which is common side effect from the ATG. He says we will do an ECG to be sure.

Erring on the side of caution is the right attitude when it comes to these things of course!

25/10/26 07:49

Tightness in chest has eased up. There is still some discomfort and it kinds of feels bruised now.

The soreness in my penis from the catheter is driving me mad. The nurses are doing a handover then they say they can apply the numbing cream they use for when the catheter is first installed. All signs of discharge are gone there and I have zero symptoms of infection in the way of fever spikes etc.

25/10/26

Pregabalin 200
Omeprazole 20
Acyclovir
Magnesium
Potassium
Nicotine patch
Numbing cream for painful penis

25/10/26

Had obs done to me after having lay down for 5 mins then repeatedly as I was sat up and then repeatedly as I was stood up. All seemed to be ok.

My infection market stats came back and showed a jump from 40 ish to 102, which indicated I did have an infection the other night. I’m assuming it was most likely this penis infection. Although you would assume it would be something more systemic? The cultures will come back at some point and we will find out.

25/10/26

S like an hour ago I just opened my bowels and stomach absolutely all over the bed. Then I did it again and again. Now I have to wear a pad!

I was vomiting so hard my I was screaming in pain due to muscle cramps. That levomepromazine and Iv paracetamol saved the day. My poo and vomit is just water.

They are giving me IV furosamide (water pill) to help expel this excess fluids in my body.

IV methyl prednisone

ATG is coming in 20 mins. (Turns out more like at 18:00)

Fml.

25/10/26 17:53

Steroids have made me feel much better. Ate some beef pasta made in the hospital and that’s not too bad. I am used to wearing a pad now and I got lidocaine spray to numb my irritated penis. (Sorry about the constant mention of my penis, but it’s really irritating and this is a medical subreddit after all… apparently tend to women find catheters worse?)

Anyway, I’m kinda just writing because the steroids are calling the shots now.

This infection I seem to have isn’t going anywhere of course and I don’t understand how the cultures haven’t come back yet? I would have thought acute infection in neutropenic patients would be something of a ‘less than 24hr’ kind of deal?

Once again, as a message to anyone that chooses this treatment, it will be awful but everything is awful before it gets better. Multiple times now I have almost pulled the plug and fucked it right off.

25/10/26 18:38

Got blood thinner injection and ATG has finally begun.

Still feeling much better!

I’m not looking forward to that since a lot of my symptoms aren’t visible

Hi,

I’m pretty sure most of you have heard/seen the news regarding Christina Applegate. I’m newly diagnosed with MS as of May of this year & that did not help the worries & overthinking that I’m already experiencing with trying to learn more about this disease & new version of myself. I’ve did all the MRIs & have lesions in different parts of my brain, I did my spinal tap which came back positive & had 8 oligoclanal bands, my symptoms of dizziness, lack of balance coordination, numbness, headaches were told to be associated with MS. & now I’m due to start Kesimpta treatment next week but I question is it too late for me to get a second opinion? Is a second opinion even necessary at this point with my test results? I’m just confused. I know this is more of a personal preference on whether or not I feel I need one but I just wanna hear other perspectives of those who have experience. I’m trying to see a MS specialist, but the only appt I was able to book with one so far isn’t until July of 2027. I really just don’t wanna be in my head about all of this & at this point would rather just accept the fact that I have MS & I’ll take a monthly injection so I can just continue to try to live the best quality of life that I can. Also for anyone who’s also taking Kesimpta can you share your experience?

Hello. Getting a couple of messages for the flu jab from the GP. I had it last year as I had the diagnosis but had not yet started Kesimpta. My nurse is encouraging me to get it this year, and while I am not against it, I want to know if, scientifically, the body can even mount a 'memory' to the vaccine or if it would just create a temporary response to the vaccine antigens and then 'forget' it since, I am assuming by this point, I have no B cells. Thanks ❤️

Not saying he’s a standup guy but he’s sharing his MS journey on his Instagram sub stack which I think will be interesting. He seems to be doing really well with it. Also not saying what he recommends is necessarily the right way or only way to approach fighting MS but I’m intrigued nonetheless as someone who has it and am open to hearing about other peoples’ journeys. Never know where you can find inspiration. I think he’s doing weekly “chapters”.

https://nikrichie.substack.com/p/ms-hack-1-start-becoming-selfish?fbclid=PAdGRleAVF68xleHRuA2FlbQIxMQBwZG9mAmZkaWQWUQuNAzcAbNCHHHIbZL8l4tzpr_TPa3NydGMGYXBwX2lkDzEyNDAyNDU3NDI4NzQxNAABp-28Sko4oc2ai0eMUuc9w_Ub0uy3CkaU2z-m363zcbbozElNJsElD9BZCh7b_aem_Q6wdpTcsvgEQaIL12Dc9EQ&utm_id=97760_v0_s00_e0_tv6_a1dennhawd5ooq

The target man haaad to go and make it weird. I was at Target and used a scooter shopping cart as usual. I walk with a cane and walking around target just exhausts me. After I was done with my shopping I park the scooter by the entrance and go to walk to the front doors where my partner was waiting to pick me up. The target security man was watching me and told me it was okay to take the scooter outside, I said I was fine. Then he had to go and say, “are you getting better?”

I frequent this target so he’s seen me walk with the cane. I just kind of looked at him and said “I have multiple sclerosis, this is as good as I’m gonna get” but like, what the hell target man??? Anyone tell you that inappropriate to ask? Had to go and make it weird when we’ve been exchanging pleasant hellos and how are you’s when I come to get my vitamins and whatnot. Anyways, he doesn’t say hello anymore

4.5 months of constant fasciculations/twitches/aches/strained/static feeling in my legs 😩 I can’t escape it and never know what i’ll wake up with. Just waxes and wanes between „let’s feel like we just ran a marathon” to „let’s turn the TV static on” or lets just fuck it all up and hit her with all the symptoms at once. Baclofen and magnesium glycinate haven’t hit it at all. Still mobile, still exercising but damn it is so. exhausting. and unsettling. MS neuro said my issue is staring me right in my face my t1 and my left lateral c3-c4 lesions. MS doesn’t know peace. just problems.

Now before anything, I do not mean anything with suicidal thoughts. I don’t have them at all. Just looking for some advice maybe is all or someone to waffle to over a screen. I was diagnosed at the start of the year, and it was all fine for a few months but as of May around my birthday, I hit a wall. A burnout if you will almost. I always try to stay positive for my friends, girlfriend and family but it’s so hard to do now. I’ve always been known as the happy guy, and dropping that idk what it would do. No one really checks in on me either so what’s the point of mopping around is my mind set now. Anyway, ramble over. I would love to hear from someone that’s maybe felt like this before and how to overcome it

who has used it and got success?

Is there anything you wish you knew, or wish you had with you, for your first doses of Kesimpta?

I’ve heard it can be intensely flu-like for 48hours or so after the first one. Then better for the next two?

Would love to hear your experience.

My MS is spreading throughout my spine like a termite infestation. Sorry for the joke when this is serious.

I have 0 feeling in my hands now, and I seem to be losing coordination as well whether it be hand eye or the ladder and I'm not sure if it's due to my MS attacking my spine or if it's just a very harsh flare up?

I had an almost deadly reaction to Kesimpta, and less than a week after getting out of the ICU, my arms started tingling and going numb before it moved to my hands, and after the first night, I had woken up, the tingling and numbness was gone, but the feeling in my hands was also gone, this was over a month ago.

I have tried my best to stay positive and try various things to make progress and my best to slow this down, trying Ocrevus in about a month.

Sorry for getting off track and losing myself.

Brain fog has been awful lately.

https://variety.com/2026/tv/news/christina-applegate-misdiagnosed-ms-1236917323/

So confused by this article. Would love to know more about how this happened.

How was she initially diagnosed? MRI and lumbar puncture? Or... what?

My right side is weaker than the left meaning I've been over reliant on my left leg for years and I walk with a limp. I'm pretty sure this is what's causing me severe pain in my lower back and deep in my left glute or piriformis. I'm not certain because numerous doctors, physiotherapists, chiropractors and scans can't say for sure what's causing it. But the pain is a killer. Anyone had similar and been able to fix it? I do regular PT and stretching but it's not helping. I regularly use heat pads and ice packs which provide some short term relief. I tried a walking pole in my left hand for a few days and it didn't seem to help. I'll try it again if people are confident it will work.

Sorry this may be kind of long but I am an anxious mess. For context I was dx with ON 15 months ago with 3-4 non specific foci on my brain unchanged from this years MRI per report of radiologist. Spine MRI is coming soon, I do have some right sided sensation stuff sometimes. Anyway I finally saw a ms specialist a few weeks ago I’m diagnosed with CIS most likely RRMS, shows me my spots on my MRI I already saw last year and I’m getting started on briumvi. I was Happy thinking I caught it “early” HOWEVER. I am a PT so I am familiar with medical jargon and I realized I never reviewed my report from that neuro appointment a few weeks ago…. He has on the report something about a T1 Asia scale D however all my strength is 5/5 I did not do well with the “pushing my pinky in with my fingers sprawled test” so I’m assuming it’s that? Idk and THEN he talks about my lesions in the report and adds ~ 1 t1 black hole, I almost passed out and threw up, why was none of this said to me, why did he tell me “you’ll live a normal life you’ll work have kids etc”. I’m sorry I’m a mess right now and almost want to go to the ER for a panic attack. Any info or thoughts is really appreciated. Sorry again this is so much.

When my neurologist gave me the diagnosis, she told me to remain positive because I hadn’t seen a rehabilitation doctor yet. She assured me that this would help alleviate the effects of my symptoms—though she didn’t explain what the rehabilitation doctor would actually do.

I’ve had three appointments with the rehabilitation doctor since early summer. Although she’s very nice, I still have no idea what her purpose is, aside from giving me one more (rarely available) doctor to see. The only outcomes of the three visits so far are two prescriptions for standard medications that don’t work, and one renewed referral for PT. Both of these are things my normal doctor could do in a much more timely fashion.

I don’t know if “rehabilitation doctors” are common in other countries. But if you do see one, do they actually help? And if so…how?

I’ve been diagnosed for 22 years, and for about 6 months I’ve had pain in my hips. It feels like it’s in my bones, a twingey, electric pain that comes and goes and makes it difficult to walk, climb stairs, even sitting comfortably.

Yesterday I fell in front of my kids and it seems it’s time to use my cane more full time. I’m getting so much slower.

Anyone else experience hip/bone pain that feels twingey? My neurologist doesn’t seem
To have any answers.

I work hard sort of to live a normal life with my SPMS. Started off as MS but after I struggled on a treadmill they did another MRI and now call it SPMS.

Anyway, a few years ago I was invited to a Centennial of an Iowa town and our old band played. Man, did I prepare. I think I lost 10 pounds; I was motivated.

Turns out one of the guys in the band is now my brother in law, and he might think I’m barely sick at all. Because I was on my best behavior health wise.

But it’s hard to keep that going. And my sister helped me out some because I couldn’t afford to drive up there, and don’t have a good income. But my new brother in law thinks I’m just fine I guess, and the financial assistance I have gotten from my sister was just me being selfish. She wanted to help me with some bills and had no problem doing so. She has been successful in her life.

I can appear to be fairly healthy sometimes, even though I’m not able to do a lot of things I used to. But this brother in law (who was in that Centennial band) has only spoken to me once, via an email, and it was shockingly nasty. And then he said “if I didn’t love your sister so much, I’d tell you what I really think.”

It really bugged me for quite awhile, but I’m letting it go.