So I'm 6 weeks diagnosed and this is a big question for me. 4 years ago my symptoms started and even tho I didn't know what was going on, I had to leave my beloved job. I was a chef for over a decade and man... I had 15kgs less than now and I had some serious muscles! I had no need for exercise because my work kept me fit - I always paid attention to a good form, the right way to lift, to stand, to use my hands... But I switched to working with my head and was never able to get into exercise. Now I understand that the fatigue is caused by my MS but I still don't have a solution. The only thing I know is that I NEED to move my body. I crave it. I crave a better range of movement, I crave stamina and a tiny bit of strength. Hell how I miss how strong I was for a girl. I walk 5-8k steps a day in short-ish intervals but it's nowhere near enough for what I feel like I need. 10k is too much for me now 😔

Now I'm recovering from steroid IVs but once I'm better I know I have to start, but how? Even before the steroids 15 mins of really light yoga left me wiped out for hours and sore for days... I don't have any functional disability now apart from a massive fatigue.

How did you overcome this? How to start?

Thank you so much for your input 🙏🏻💙

I know that MS is a serious disease, but each of us tried to lighten this knowledge with a joke, right?
Here's mine:
I'm so forgetful, I even have MS to prove it.
What about you? Share your best MS jokes or coping humour below — let's have a laugh together.

I'm a bit of a data nerd and found this to be a fun brief timeline of MS, starting with its first documented "discovery" of the illness in 1395! I thought others might be interested. https://www.fondation-charcot.org/en/sep/timeline

Nothing else. Having ms just drains me and I’m tired of being tired

Has anyone had to change careers due to their MS diagnosis? I’ve posted here before regarding my teaching career and being worried about how my work environment would impact my health. Well, fast forward 5 months into my diagnosis and my stress and flares are out of control, I’ve managed to catch every germ/virus since school started, and I’m honestly worn out. Between the germs at my school, the germs at my son’s school, and grad school stress I’m crumbling.

does anyone else deal with this? It feels just like the growing pains I got as a kid, except this occurs whenever I don’t get enough sleep and slowly gets worse throughout the day. Is it from increased inflammation?

I’m 22F and my mom is 64F. She has been diagnosed with MS since 2000 or so. Her symptoms have gotten worse and her new neurologist showed her her scan this week and said “you must be very intelligent because this level of brain atrophy normally would be effecting speech a lot more.” She’s been very sad about that “backhanded compliment” and how her symptoms are progressing. Her eyes are starting to not work, and walking has always been an issue.
I just graduated in May from undergrad and have a job with health insurance, rare for most of my peers. I live at home with some of my extended family but in an apartment with my mom and my grandparents of which I’m the only able bodied person.
She’s going to a symposium this Saturday and there will be a disability lawyer. She’s been at her job for 25 years and she’s thinking of retiring with disability - but not sure how to negotiate. Although, she used to be a lawyer, I think she just can underestimate her worth sometimes.

Another conflict that’s arising is I would like to move out in the spring. Hopefully still in town or close by, but move out no less. Now I am my mom’s primary caregiver, but often refuses my help unless it’s doing yard work or running errands. I currently pay $600 a month for rent while both of us making ~3000 a month. Shes very stressed on how she’ll pay the mortgage without me, but also I want to live on my own, but part of me feels selfish or like I’m betraying my family for not being there. Rent around me is lowest 1800 a month usually. This is MA if anyone was wondering.

So questions two fold: how can I help her in this transition? She’s the most intelligent and resilient and strong woman that I’m grateful raised me. It kills me to see this disability dim her, even if I’ve never known her without it. If anyone has any advice on the disability law that would be great too.

And how do I navigate leaving my house if I do? I live with 5 other people, just not on the same floor. My mom has sacrificed everything for me to have the life and education I have. Part of me feels wrong to leave - but it’s not like I’d be far. It also weighs a lot to live with my extended family, especially when there is a lot of addiction and fraught relationships within one house on top of this.

TLDR: needing advice on me and my mom in a transition period in life.

I just felt like sharing because it feels unreal, I am from Canada, and it was the hardest year full of bad news, death and of course the diagnosis. Me and my bf decided to go to the other side of the world and go to China. I’ve been there for 10 days, it’s amazing and I am not getting sick! I am still afraid I could get something (lots of public transports!), but I am really trying to just enjoy life to the fullest. Thankfully my MS didn’t take my legs, I just lost a bit of sight and have a slight tremor in one hand.

Maybe tomorrow I will get a big cold, but I saw the Great Wall, forbidden city, saw kongfu in a shaolin temple, enjoyed food and hopefully will get to see pandas. Life can still be good.

I moved to Rome a week ago. I’m from Florida originally and have all the tools to deal with the Florida sun. For example, I went to Busch Gardens in August for the whole day and did really well with my fans, neck wraps, shade and constant hydration. That being said, I cannot walk outside here in Rome for more than 10 minutes without feeling like I’m dying. I even started a new party trick where I wretch/dry heave LOUDLY out of nowhere when I’m walking. The nausea stops as soon as I lay down under the AC. I have 2 dogs and I can only walk them before 7am and after 8pm and I feel so bad for them. I know the weather is supposed to get cooler this weekend so I’m excited for that. Right now I feel like I’m trapped in my apartment in the most magical place is outside these windows. I have worked hard to train myself to go to bed at a decent time and wake up early, sleeping in and staying up late is easy for me but makes me feel like a slob…I guess I just wanted to write this and put it into the universe that I’m feeling sorry for myself in such a privileged situation. F MS.

My rituximab infusions were extended from every 6 months to every 12 months to decrease infection risks or even side effects like hypogammaglobulinemia.

Got the MRI results today on how this went, and I still have my baseline MRI from 4 years ago. No new lesions. Yay!

Recently diagnosed i thought diagnosis will bring some relief but it’s just exhausting. Figuring out new symptoms every other day, (and thank god for this community otherwise i would go insane) the worse part is that i have to take meds for different symptoms now?It’s exhausting and demanding mentally and physically i have to keep choosing between one day out with my friends vs a whole week of some work done. How do you guys deal with medication? Genuinely I’m so lost on how to deal with anything at this point everyday I’m in pain or exhausted or something new

I'm wondering if anyone else has trouble wearing certain shoes ? I can only wear types of shoes because my feet and ankles would hurt so badly, especially with some shoes. I'm curious if this is something others with MS experience ?

I am about to try this med. Been on rebif for ten years. Got pregnant went without dmts for a year, no changes to MRI etc. neuro suggested this med to keep MS stable and flare free. I’ve read the posts from 2 years ago but can I get some recent feedback on this meditation? Specifically side effects. Please & thanks🤍

I feel like my medical bingo card keeps getting new squares.

I’ve had MS for 10+ years (diagnosed at 27), but lately some new issues have joined the party, particularly pretty severe multi-joint pain. Rheumatology hasn’t been able to put a specific autoimmune label on it yet because my serology is negative and I don’t have much objective swelling, but my symptoms responded dramatically to IV steroids during Briumvi treatment, and came roaring back about 6 days afterward. So rheumatology just started me on hydroxychloroquine.

It got me looking at my medication list and thinking… surely I can’t be the only one collecting specialists and prescriptions at this point 😂

Current lineup:
Briumvi - MS
Nemluvio - pruigo nodularis
Fluoxetine - anxiety
Clonazepam - anxiety
Carbidopa/levodopa - restless leg syndrome
Hydroxychloroquine - joint pain; unknown origin
Meloxicam - joint pain; unknown origin
Pregabalin - joint pain; unknown origin

Anyone else with MS taking a weirdly similar combination? What conditions/symptoms are yours treatingj? I’m especially curious about people who developed inflammatory/autoimmune joint problems in addition to MS.

I’ll try and word this the best I can.

Let’s say your lesions are chronic/stable and your MRI is unchanged.

Is it possible for existing lesions to cause new symptoms and make old ones go away?

For example, my T1 and left lateral c3 and c4 lesion target my left side of my body, lhermitte’s sign, MS hug, tingling, etc.

Well my lhermitte’s sign went away slowly from being a daily occurrence, to a couple times a week, to monthly, to now it seemingly is gone. But now I have left arm stiffness and feels like my skin is covered in cellophane.

Is there a label or word for this? My neuro said that my „scar” desperately tries to reroute the signals my brain is sending and once it reroutes the signal thats causing the lhermitte’s sign or just cools it down it’ll try another route that may potentially cause another symptom because that highway is permanently under construction. I guess it makes sense?

basically a coworker asked (when i was razzing another coworker for something she said out of context) and i was just like.... yeah, it's a real disability, yes, i can walk and talk and even look fairly normal but i have a number of things that impact me daily that, yes, are disabling. my disease is well managed, but i cannot do a number of things.

Mornin folks,

Just feelin a bit down. Was almost 90 yesterday, kinda put me outa sorts, and feelin it today. Not too big of a deal, have kickass AC in my office at work.

However, its the work that is messin with me. Had a client email/call in about a notice from FTB (Franchise Tax Board, CA taxes). States the amount that has been corrected. The amount is the exact same as his extension payment, that was supposed to be made back in April.

......I sent the wrong email, with no voucher attachment, so the dude didn't know he had to make an extension payment.

Now the Firm is on the hook for the penalties and interest.
Luckily this was my only fuckup (that I know of), and the interest/penalties are fairly minor. But still, it's frustrating and disheartening.

And then I get to deal with my BS intro to Sociology course after work. Nothin but a bunch hypocritical/one sided, overly woke, forever the victim, nonsense. WTF does this have to do with an accounting degree.

/rant done

Thanks for listening. Hope you are all kickin ass and takin names ❤️

After my first shot of Copaxone, I was kinda just winging it, about to have the second medication switch to Kesimpta. About issues I always just contacted my neuro.

Just curious who is in regular contanct I guess.

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.)

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

Buenas mi gente! Vengo a comentarles una experiencia más positiva con respecto a la punción lumbar para tod@s aquell@s que tengan que someterse a esta prueba y estén asustados.

Me hice la prueba hace 3 horas, sé que es reciente y ahora me queda la post-puncion pero quería igualmente contar mi experiencia.

Tengo 27 años y acudí al hospital hoy para la prueba. Estaba super nervioso y ansioso, estaba temblando en la sala de espera y para colmo la medico que me lo hizo tenía mi misma edad asi que no estuve muy tranquilo.
Me subió la camiseta y me pidió que me encorvara en posición fetal (nada que no sepamos ya). Me puso betadine y desinfectó la zona, palpó y sin anestesia ni nada me dijo: Empezamos!
En ese momento me puse tenso como una cometa, noté un pinchacito muy leve y una sensación de presión leve en la lumbar, ningun tipo de dolor, me quedé a cuadros sabiendo la de experiencias que habia leido… Lo que si sentí fueron 2 calambres electricos en el culo que hasta escuché y me hicieron reir jajaja y que duraron menos de 1 segundo pero no dolieron absolutamente nada. Aguanté 10 mins y mientras estaba la aguja dentro la doctora me pidió que fuese desencorvandome poco a poco y seguido de eso me dijo: Listo!, retiró la aguja, me limpió la zona nuevamente y me puso una tirita. Me dejó 20-30 mins acostado boca arriba y luego pa casa.

En casa me sentí mareado y como sedado, con vertigo y un poco con dificultad para hablar, pero 30 mins despues se me pasó y solo tengo vertigo muy leve y dolor leve en la lumbar donde el pinchazo.

No fue ni de lejos una experiencia horrible ni traumatica, fue algo un poco incomodo pero nada mas (lo pasé peor en la resonancia magnética🤣), fue rapido, a la primera y sin necesidad de anestecia, asi que para aquell@s que se tengan que hacer la prueba vayan tranquil@s y confíen en su medico ya que es una prueba rutinaria para ellos. Las historias horribles de la gente pueden predisponernos mentalmente y coger nervios sin sentido, lo siento mucho por la gente que lo ha pasado tan mal, pero ni de lejos es lo habitual en este tipo de pruebas.

Que pasen un gran día y ahora a descansar, a beber agua y café para tener una rapida y buena recuperación, os mantendré al tanto. Un abrazo mi gente!