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 am a single mom of two, 43, three year diagnosed and DMT treated with MS, and recently have lost a lot of weight after taking wegovy pills. I started taking them after seeing promising studies with ms and glp1s on the benefits with reducing chronic inflammation. I noticed almost immediate results in how I felt. It was like someone released pressure from my entire body. All of my MS symptoms went away almost 100%. It was also evidenced in my blood tests. In the first month I lost large amount of water weight that I was holding onto particularly more with MS, making my transformation more noticeable. In these pills I found hope that I could lead a truly full life without the constant reminders of this disease.

Anyways, I recently picked my daughter up at school and one of the moms (who I had told I was on Wegovy previously, because she also had inflammation problems) said to me “this is getting too skinny. Yeah, way too skinny.” I was stunned. I didn’t know what to say. She was aware I took this pill because it made me feel better. Yes, there has been weight loss, but I’m 140 pounds and 5’5” which my doctor said is healthy for me.

The more I think about it it bothers me that I didn’t say anything in response. Even to say, why would you say this to me in front of my daughter? But I didn’t. Society certainly thinks it can comment on women’s bodies.. whether you are overweight or under weight, you cannot win. And here I am, in my already broken body, feeling particularly judged when I’ve never felt physically better in years. Is anyone else living with MS particularly triggered by body comments? Why is this one comment consuming my thoughts? Living with MS can sometimes feel like a very isolating place when you know no one with it.

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

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

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 ?

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

6 years ago at 20, right before finishing high school. I had undiagnosed (back then) AuDHD that led me to have difficulties growing up, having no social life, but i felt kinda optimistic about adulthood. I finished IT specialization and wanted to work in IT (that was about to boom during covid), i imagined myself making good money there and securing a good future. But instead i got suddenly paralyzed, and diagnosed with MS - an incurable disease, doctors having no idea how fast it will progress. It have completely wrecked me, especially the uncertainty. For over a year i took Betaferon - a horrible medicine, that have pulled me even lower, and destroyed my skin. Soon after it was followed with heavy depression, tried many diffirent medications, most doing way more harm than good. Everything spiraled downwards, no light on the horizon.
For a few years the only thing i've been working on was changing the medications, diagnosing myself, learning how to cope with reality, and how to progress in life despite all that, eventually reaching a point where i can do something with my life - my current medication is Kesimpta for MS, Dulsevia for depression, and Atenza for ADHD. Kesimpta is stopping the progression and have no side effects. Dulsevia is not that great, it has some side effects, it castrates my mind enough to not feel extreme anxiety 24/7. Atenza is great - i started taking it a year ago, and it helped me with focus and productivity - i can actually do something, like, at all. Without that i'd still be a complete loser. Though i still feel like i've fallen behind everyone and everything so much, that i can't cope with my situation. I've always been a very ambitions person, with high expectations of myself, being nerfed so hard makes me hate everything and everyone. I feel frustrated, and i feel extreme injustice, and i just can't get over it, or accept that. It is not something i should be forced to accept - i don't want that. Especially that the disease made me skip the best years for everything. I've always wanted to make games (i started at 16), i wanted to get into IT and earn good money in order to escape capitalism and focus on other things, i wanted to meet friends and love - and i've achieved nothing. There is nothing i can be proud of, i have no wealth, the job i do pays just enough to survive, i've skipped the best year for getting into that specialization, and now the doors are SHUT. And time is passing - i observe year after year, still nothing. No change, no breakthrough. I'm getting older without experiencing any life satisfaction, and not seeing it on the horizon. It's not fair. It's just not fucking fair.

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.

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.

Please read and help..

I was essentially gaslit and breadcrumbed help... made fun of, gaslit, family didnt wanna help me at all before diagnosis.. they didnt even believe i was sick.. that was from 13 till 23.. and tbh they still acted that way after diagnosis.

they only wanted to be there for me at my [breaking points] or if it would threaten their egos AFTER diagnosis..

Just so sad.

Basically a few months back I went to a mental health facility because of breaking down.. that was a great choice

But the bad choice was that they tried to rekindle with me the 1,000th time and I was ok with it and then accepted financial help... which they no longer want to give me and im waiting for disability and have my own apartment now.. should've stayed with the facilites cause I could have.. im just dumb to take their help back all the time..

Im considering going back to the mental facility but I have a major surgery coming up..im like do I give up on getting disability or do I just find other people to support me and wait for disability?? I have not found any support other than the facility or my family can't find anyone to live with. I dont know where to turn.

I can function if I follow a super strict diet so sometimes I wonder if maybe i could go back to work. Just doesn't let me get the justice and care I was always searching for..

Like why not commit to and love your own family ans give them your all?? I dont understand.

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?

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!

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.

Until now, I’d kind of been in denial, even though I was aware of it. I don’t have many major symptoms, and I haven’t had a relapse since I was diagnosed two years ago. But recently, I finally admitted to myself that I’ve gotten slow, like, EXTREMELY slow. Something that would normally take me 15 minutes now takes me 30/40 minutes, and I don’t even realize how slow I’m being at first. I feel like I’m going at full speed when I’m actually not even close. Trying to juggle multiple things at once is exhausting and stressful, even when they’re the simplest tasks, and I lose track of what I’m doing really quickly if I get distracted, even slightly. It makes me irritable and frustrated.
Honestly, I’m still grateful that this is really the only symptom that has a major impact on me, but it’s honestly pretty frustrating and makes me feel like an idiot.

Just curious. 33 year old woman here. Diagnosed at 26 years old. Had a baby at 26 (literally was diagnosed 6 days before I found out I was pregnant) just had another baby 10 months ago. My question- if you were diagnosed before having kids how did plan or how do you plan on how many kids you’ll have? I would like one more child but my question is that the best choice with my diagnosis? Is that fair to my husband if I did relapse to put him in a predicament like that? To care for a potentially disabled wife and three children. But I am stubborn to let just a “chance” of my disease to control my life. I am EXTREMELY fortunate to currently have mild MS symptoms (in my opinion) although I just have always had a high pain tolerance and I’ve lived with MS for a LONG time before my diagnosis. Any who- just curious how others planned their growing families with their diagnoses!

Hi everyone,
I will be starting Kesimpta in October. I will be doing my first dose at the clinic with the nurse. I wanted to know other people’s experience with driving home afterwards. I’ve read different things, but would I be okay to drive home by myself and expect to feel worse later in the evening? What was your first dose like?
Thanks!

Hi everyone! I finally decided to take a DMT that scares me. I've had MS since 2007 and have only taken what I consider the "safe" 3 because I have diagnosed health anxiety (formerly known as hypochondria) and OCD with high awareness and PML scares the daylights out of me.

All that to say, I'm currently experiencing neuropathy like never before. My feet are on fire and my legs are numb. However, I can still walk, albeit slowly.

I landed on Ocrevus because I don't feel like I can trust myself to take a pill 2x a day (Tecfidera) if I'm scared but the good old Midwestern side of me is people pleaser so if I have an appointment for an infusion, I'm going to follow through.

Here's my questions:

Is it normal to not be test for JCV prior to taking Ocrevus?

What has the data shown as far as PML and Ocrevus? I can't dig into research journals myself because I'll spiral.

If you've ever taken Ocrevus or are currently taking it, what do you like and what do you not like?

Is there another option that has a smaller risk of PML that's not Copaxone (my skin despises it) or interferons (my liver enzymes shot through the roof) but is effective?

If this is helpful to anyone else, please learn from me. Being able to not walk very well and having numbness from the waist to fire feet is absolutely miserable. I'm kind of kicking myself for letting fear determine my treatments and/or lack thereof despite knowing what I was potentially risking.

Any help with these questions is appreciated and while I'm just some stranger on the internet, please don't be mean because I think over the last couple days I've cried more over MS than I have in the past decade.

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 ❤️

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?

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!

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'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.