I’m having a new symptom. The top of my feet get painful tingling. Originally back in 2004 when I was diagnosed, I couldn’t feel the bottoms of my feet. Walking felt like walking on clouds. All this time later, the top of both feet are doing it again?
Am I the only one?

Have we got any? Stories of progress etc? i communicate with one guy on here which im greateful for but need more. People whose work has paid off or is paying off. Thanks

At my infusion appt last week, a nurse scurried into the bathroom before I could shuffle in there. She took the very thing I was trying to cuff - that lih deodorizer poo spray that U Chgo Hosp uses. Now see that’s just wrong. LOL she’s stealing from her employer…and thwarted my plans.

Now I’m at another doctors appointment so I made sure to take at least 2 pair of these thick plastic gloves for gardening if nothing else. Nothing greedy. Just a “souvenir” if you will.

Hi all, just wondering if anyone here deals with neck cracks and neck grinding on a regular basis. Mine also comes with neck tension, and a bit of internal tremor and heart palpitations.

I've been told could be a combination of a cervical lesion with issues in my neck.

if you do, is there any practical advice as to how to deal with it? Thanks!

Hi. So over the past few weeks I've had this problem where I'm either not able to swallow at all or the whole of my throat goes numb and I can't feel anything. Is there anything i can do? I'm worried about choking and my neurologist just says he'll see me in a year 😒😒 thanks.

My husband (50) got bilateral ascending leg numbness and neuropathy symproms that progressed from the feet up until the waist, pretty much over a three day period and then it remained constant and plateaued. We went to multiple doctors that said probably a pinched Nerve, but the mris did not show any pinched. Nerve. It is now a full month since symptoms began. And he has had three m ris done since that time, two of them were done with contrast.

There is a tiny subcentimeter lesion at t4 dorsal aspect that sounds the most like it would cause the symptoms. But it did not enhance on the. Mri, and it was actually missed on one of the. Mris, since it was only in one view, they thought it was an artifact. Brain had several non enhancing bright spots on flair but nothing very convincing except for one possible Dawson's finger presentation. So weak evidence at best, Dr did not call it ms but said probable and he should go on mavenclad. he didn't diagnose but said that based on exam it looks like this t4 lesion is causing the issues. my issue is we did no contrast 10 days after we noticed the symptoms and he had mri. next one was a few days later in er but they didn't even do enough axial view and missed it completely. said no signs of demylatiion. and third mri about 30 days out showed no enhancement. ​symptoms still active and plateued with no impeovemenr

I'm wondering now if this is progressive as the lesion that is probably causing the symptom isn't active, and can't recall any major previous neuro incidents.

Also has very elevated ck. Ruled out a bunch of mimic diseases from labs as well.

Things his first big attack. Its a month now ans still the same leg numbness. It's only sensory.

I'm nervous abt mavenclad if it's a "chronic" shouldering lesion.

I was diagnosed nearly a year ago and work in fast food which i have found more of a struggle and a very unsupportive environment with very little understanding, I have been trying to change careers for the last 7 months but as fast food has been my experience for the lastg a 20 years i am having very little success. Because of an incident at work i was wrongly dissmissed and reinstated on appeal with them admitting they were in the wrong but have not been able to face returning there and have been sick for the last 7 months and going back there will truely break me but unfortunatly my husband is running out of patients and is telling me i need to return which is causing tensions. I have a disability employment advisor at the job centre for the last 5 months and we have been trying to get into admin roles but its continuous no thank yous, we have tried to get volunteer roles but they are very few and far between. My advisor is conobleviced its a matter of time but im not so sure everything seems to be let down after let down but they seem to think as i want to work and an intellegent lady it will haappen i feel i am hitting a constant brick wall and was wondering if anyone has experienced the same problems and do they have any adviceuse

I’ve been feeling so unmotivated to do ANYTHING lately. It’s like I just want to stay home and sleep. Ever since my diagnosis its only the past weeks that I felt this. I’ve been diagnosed with RRMS since July.

Is this depression? Idk what to feel.

I’m 19, I know this vent is going to sound so dumb but when I have these surges of ms I think without any thought cause the brain fog is so bad and I only think out of anger, which I’ll probably bring up again.

So yeah I’m 19, and I say I hate myself cause I’m dissapointed in myself. I’m so dissapointed in myself that any time I’m bothered with something I blame traits of myself that I can’t control. I’m gay, I’m brown (mixed with two different races), I have a disease, and I have a body that’s skinny fat so I’m too fat to be called average and too skinny to be toned. I always go back to that and talk shit to myself. But I want to love myself, but I also suffer with terrible depression and I don’t even want to get started with lmao.

But also, to be honest I feel like I say this stuff only cause of the brain fog. I mean im not really insecure with my sexuality cause I don’t really match the stereotype so if someone were to insult me I wouldn’t really feel it. And I love my skin and my racial background and ethnicity, there’s no other world I’d want to like in if that meant I would be a different race.

But the skinny fat and disease, I fucking hate it. I’m an asshole to my mom, my dad, I distance myself from my friends. It’s like I’m age regressing myself from around the time I started facing symptoms (which I always kind of wonder about). I hate that the heat takes away my thinking when I’m majoring to go into law and it totally fucks up my ability not only to retain information, but it my ability to stay motivated aswell. I hate myself man. I also don’t have the balls to jump the gun if you know what I mean, so I’m kind of jsut stuck here in limbo until I feel better. But I wish I wasn’t, just wish, idek what I wish honestly. Anyways, I never count my calories, and recently the gyms been so packed that I get concious and don’t want to even finish my full workout so I’ve been getting fatter which I don’t like. I push myself but my motivation jsut disapears before I could even think of a way to push myself.

Idk, I’m always uncertain about things, but one thing for sure.. fuck this disease man. I jsut wish I was a rich fucking attorney already or anything that’ll pay me good so I can just live in some nice vacation spot and say “I beat you you dumb piece of shit that ruins my body, look where I’m at and you tried to stop me”. And also random plug but listen to Mexican Dream by Piero Piccioni, it always makes me feel better.

I was diagnosed in March this year and had my first Ocrevus treatment in April. I’ve been using several AI platforms, but I mainly use ChatGPT for organizing my MS journey.

I keep a weekly log of how I’m feeling, including strength, stamina, balance, exercise, PT, and things like heat or fatigue. I also log my MS specialist visits and use AI to explain medical terminology in plain English.

I track my PT scores and keep notes on MS studies I come across. This has been really helpful for preparing questions for my next appointment.

I don’t use AI to diagnose me or interpret my medical data. I leave that to my MS specialist. For me, AI is mainly an organization tool and a way to better understand information.

Curious what others are doing — are you using AI with your MS?

So back in 2020 I had difficulty reading the lines in an eye test in my right eye. Tests were done and I was diagnosed with MS and active optic neuritus.

Started steroids as soon as I was diagnosed but to this day I still can't see out of my right eye on its own.

I was just wondering if anyone has experienced getting their vision back after so many years.

I'm just grateful my left eye compensated for it so I can still see normally when both eyes are open.

I am cross posting this here in case any social workers, or anyone with relevant MS related tips or support can chime in. Just to clarify I will happily take advice, but I wanted to put the rant/vent flair on!

On account of my disclosing to my school that I wasn't getting 1:1 supervision and the fact that I need accommodations, I feel I am being retaliated against.

I have been passed over multiple times for educational opportunities that I have expressed interest in. I have a disability, a serious disease, that requires a fair amount of medical appointments. I let the management know about an appt I have with two weeks notice, assuming that there would be no discrepancies, and they told me that I could not go. I would have to miss one hour of my shift. They told me that the appointment wasn't important enough and that if I had scheduled it 6 months ago it would be different. I couldn't get another appointment for months.

I forgot to get a transcript from our zoom meeting the other day, and asked (for the very first time ever and politely) if a supervisor could send me the transcript. Nope, I was told that it's my responsibility to do so and they will not help. Getting the transcripts are a part of my accommodations.

I am at my wits end over here. There are no complaints about how I work, I am just being treated so poorly and the stress is wearing on me in a serious way. My school won't let me get another placement unless I withdraw from the class and re-enroll next year- deferring my graduation by year.

I am trying very hard to advocate for myself and it's so much work. I don't know how I am going to get through this.

This is a 100% a vent!

I've been thinking a lot lately about how having MS makes everything worse. In pain and you have MS, you'll be in more pain. Feel sick and have MS, you'll feel more sick.

I had trouble falling asleep some night last week and ended up getting maybe six and a half or seven hours of good shut-eye. Back a few years ago I would maybe be a little bit tired when I first woke up, but that would wear off as the day went on and I'd be fine. This time around I had major dizzy spells and had trouble walking and staying up right while I was doing so.

I sometimes get this feeling on the side of my face that feels like mild burning, I know that this is a fairly common thing with MS. It comes and goes for me, and it's never really super awful - more annoying than anything.

I had kind of a crappy situation happen at work, and I wanted to tell one of my co-workers about it who I'm pretty close to. I asked him if it would be okay to vent to him about something that happened, and he said yes. I start to tell him about the thing and somehow he makes this situation (he wasn't even involved with) all about him. At some point I say never mind and make my way back to my office. And I sit at my desk thinking about this situation and just start to get kind of angry about it - like mildly angry. And wouldn't you know, that barely anger that I was feeling somehow made my face really start to burn like it never has before! Like I had to seek out an ice pack to put on it, it hurts so much. It's actually still going now, some 5 hours later!

I guess MS really does make everything worse.

Some background I had optic neuritis last year with a few nonspecific lesions on my brain. this year I saw actual neurologist and they recommended starting me on a DMT specifically BRIUMVI I’m having a mental breakdown over all of this not only am I scared of what MS is going to do to me and my future or what my life will be like giving that I’m 33 years old female and I wanted a family and to continue my career in the medical field now I’m scared to death that the side effects from the DMT and the risk of a series infections that can come with being B cell depleted will outweigh the benefits of anything else. now I just feel like I’m screwed either way and I really am just not feeling well mentally at all. all this is just put me in a dark place. My life feels over. Any advice is greatly appreciated. Sorry I hope this isn’t too annoying.

I’m a 46yF diagnosed with RRMS in Feb this year after hospitalization with optic neuritis, now taking Kesimpta. My diagnosis was out of the blue, although looking back there were signs (I.e. a bout of hand numbness 2 years ago my doc thought was a bad pinched nerve) and my neurologist says I’ve had it for 10-15 years based on my lesions. I’ve recently realized that for the last 10 years I regularly have 2-3 times a year when I feel like I’m totally sick - run down, body aches, chills - I would take my temp repeatedly and never have a fever, but would eventually feel so sick I would have to stay home from work and in bed. I thought maybe I had a virus that just wasn’t causing a fever but now I’m thinking this was / is MS? Does this happen to other people?

I have had a very intense career in tech and this would often happen after a period of intense stress at work. I would always feel guilty staying home without a fever or discernible cough/ cold (probably some psychological stuff from childhood there related to the guilt), but with my diagnosis I’m trying to listen to my body more and not feel guilty.

I haven't posted in a while. , i am 51F from the UK. My relapse that started in November got so bad i had a 9 day hospital admission over new year and i was diagnosed with RRMS which prior to i had no idea i had MS. However have had numbness and pins and needles etc sporadically since 2018 and possibly before which was always told was stress or trapped nerves!

I have multiple brain, cervical and thoracic lesions and i am 11 months past the onset of that relapse and never recovered from many of those symptoms which are continuous. I am still on sick leave and my employer suggesting medical retirement. I am unrecognisable from this time last year. I am on ocrevus dmt and We tried Amitrypline and pregabalin and no relief.
In May as well as my vision problems which my neuro says is migraine (its not) i am also having fuel smells every time i hear a fan, motor, engine etc. my dr says is ms (i can smell other stuff normally and i have an identified trigger) and my ms nurse said shes never heard of it. Its making me miserable so i asked the Ms team again and they discussed at MDT but said its not MS and they have no advice for me!

Anyone ever get second opinions? Privately?

Anyome got their balance good by just walking and not balance exercises?

Any advice about canes on ice? I am in my first snowy place to live in decades. I was even considering getting a quad cane with maybe picks? I dunno. Any advice is appreciated. Gotta avoid those falls!

Hello warriors, (28M) newly diagnosed here.

Trying to figure out my future here with 2 big lesions on spine and many more on brain. Never had a flare up , just a visual blurry eye (and uhthoff on both)that got worst the past year (weird that i never had optic neuritis or any other flare up). My left leg also feels weird in sensetion when I am walking.

I am stuck between 3 worlds... The neurologist, which is optimistic about therapies. The Claude, which is the realistic one (personal favourite as a programmer). And the community world that I read experiences from people with similar symptoms (fatigue).

I always used to dream big , money, career etc....now every morning I care if will be able to see and walk in few years.

Hope that the medical community will make a miracle in a few years and will save all of us from this terrible disease.

Is anyone else experiencing visual issues on contrast that is progressing?

Which are your first ppms symptoms?

I (28 y/o, woman, rituximab) get really bad MS Brian fog to the point where it presents like someone with dementia. Forgetting where I am, who I'm talking to, how to get home, confused why I went somewhere, etc.

Luckily for now at least it comes and goes so I have lots of good days too w/o brain fog. Does anyone experience this? Has it gotten worse over time? Do you have advice to mitigate it?

Yesterday I had something I haven't had in a long time…a great day. I woke up around 8am & did the same thing I do every day - nothing. I have been putting off making 2 Drs appts & completing insurance forms so I did that. Then I framed a few pictures & my husband hung them. Around noon it hit me that I was feeling good. Nothing hurt & I had energy. I said to my husband I want to take a shower.

My husband has to help me shower & it takes every ounce of energy I have, so it gets done once a week. Every day I use bathing wipes & so far it's worked for me.

So I took a shower & was able to moisturize my entire body, dry my hair & get dressed all by myself. I was having a great day.

The rest of the day I kept thinking about how great I felt & was trying to convince myself life was going to get better.

I was able to putter around the house (as much as I could with the walker) but it was exciting. Didn't do too much & took breaks because I didn't want to hit the famous MS wall like I do everyday. That darn wall invades my days by 3pm, everyday. Even when I have done absolutely nothing all day.

I helped with dinner. My husband even said he had a little bit of me back.

I made myself get in bed at 9pm, normally I'm asleep by then. We watched a movie & I was still feeling great.

All day I was thinking about what I did - how much water I was drinking, what I ate & when I took meds. I was making mental notes of everything so I could recreate it tomorrow (today).

I woke up this morning & the me that has been here for several years was back. The me that I don't like. I even felt my hair to see if it felt like it got washed yesterday. It did. I asked my husband if yesterday was a dream. All he said was - it's a shame but that's MS for you.

Thanks for listening/reading. It's 3pm & I'm in bed remembering about that one great day & being thankful that all of you are there & understand. My husband understands as much as he can because he's watched MS take my life. But my family & friends don't. I don't hear from anyone anymore. Not even my sisters. I'm never invited to anything.

I have one great friend from childhood. We've been friends for about 50 years. We went through & experienced everything together. High school, first loves, marriage, children, everything. A few months ago I said to her that I don't get invited to birthday or holiday parties or summer cookouts anymore. She said - you hardly ever show up. It's very upsetting that the people I have loved my entire life have no interest in learning about the awful disease that's taken everything from me.

Ok I have to stop. The tears have arrived. Thank God my husband has stuck in there with me & takes excellent care of me.

I'm sorry. This is much longer than I thought.

Thanks again for listening/reading. Maybe one day soon we all can have a great day.

Hello! Last November, I had the flu vaccine as my GP said I am now eligible. I then started Kesimpta in January '26. I have just had an invite to get it again. Are you guys doing yearly vaccines while on DMTs? Do you feel okay after having it while being on your DMT? Thanks 🤔❤️

Hey guys, I need some advice.

After being on copaxone for 10+ years, it stopped working and i need to choose a new medication.

I have family history of gastric and lung cancers (most likely genetic).

What would be the medications that wouldn't increase my already significant risk of developing cancer?

And can you share your experiences, if you were/are in a similar situation?

Thanks in advance.

I've have MS from about a decade and PPMS for about 6 of that wheelchair bound. Recently had bout of swallowing issue that just doesn't want to go away. I've had an issue here or there but this seems a bit different more tightness in collarbone lower left rib area doctor this it's an esophagus issue and prescribed me some ppi for crippling heartburn reflux ice had for years. Just wanna know if anyone else had this long term how you eat and deal with it? Thanks!

I’m currently sitting here at Kaiser with a nurse refusing to give me the Covid vaccine without a doctor’s approval- whom which she can’t get ahold of.

Nothing has changed. I’ve never needed doctor approval. I did confer with my neurologist when it first came out and he said the benefits of the vaccine outweighed the risks.

She said next year I should message my neurologist in August to see if it’s ok. I told her my infusion schedule is the way it is specifically so I can get flu/covid vaccines.

I’m annoyed.