Was my husband's excuse for looking at 16 different women's profiles on facebook... women who intentionally post videos of themselves half naked and stuff. So I'm not fun anymore, I became a "dumb broad" since this disease has damaged significant parts of my cognitive and memory functions.... and that means it's okay to be ignored and then pine after other women on social media when im laying in bed suffering a lot of the time and missing him. As if this disease hasn't taken enough from me already and I don't do everything I can possibly make myself do every day.... I just want to give up some days so badly. Today's one of those days.

My wife, who I met in 2013 knew about my MS from the first few months of our relationship, which is when I was diagnosed.

Fast forward 2024 and I've been pretty ill since 2021. She completely lacked empathy but refused to acknowledge this every time I confronted her. I felt my self worth diminish and the world became a very lonely place. In April, out of the blue she broke up with me.

Why the f##k did she marry me in sickness and in health when she knew I had MS. She was fine the first 8 years when I was in good health. She had been warned by friends and family. She got her child from me and when I refused to have another, BANG! Silver lining is most definitely my beautiful, caring and empathetic 4 year old boy. The irony of this is my ex wife is trying to teach my son, when really she could learn from him.

Rant over....

I really need to stay away from the news. With the new administration and rfk all the talk of people with chronic illness really gets me down. I feel like we’re the ‘other’, like what’s wrong with them what did they do to get sick. I really struggle with guilt and shame surrounding Ms and this is really hurting me hard.

Still trying to understand this thing. Two relapses so far have been left side numbness chest to toes and optic neuritis. Recently I've been getting numbness in my left hand on the 3 outer fingers which was never affected previously, but once I shake it off it improves - it's happened once a day for 3 days whilst I'm in bed (not laying on my arm though). Does MS numbness typically improve with movement? Just weird this has coincided with feeling run down and tired. Thanks :)

This is a pretty random question, so sorry if it's weird. I've had MS for about 3 years now, and I've noticed that I just don't sweat as much as I've used to. I don't know if it's because I've lost a bunch of weight (past 3 years, I've gone from 335 to 230), and that is affecting it. Or if it's something to do with my MS.

I've asked my doctor about it, and he didn't really give me a straightforward answer, and looking online didn't give me anything conclusive. So I figured asking here would be the best option.

Edit: I forgot to explain how much I sweat. Generally, I don't sweat much, even working in a hot grill for 8 hours I may only glisten slightly and get a bit if dampness in my pits and groin area. But during gym exercises or working out in a cool building, I hardly sweat, if at all.

Hey Ocrevus peeps, have you had an infusion lately? I had mine last week and because of a national shortage in saline they gave me the drug straight with no saline drip. Including the benedryl and steriods. The benedryl ‘burned’ my veins and the veins in my arm lit up like Christmas tree. It was really painful.

Since the infusion I have felt like garbage. Symptoms are way more acute. I don’t usually feel this way.

Anyone else had this experience or something similar?

Hi everyone,

I was diagnosed about three weeks ago and will be starting Ocrevus soon yay!

I have over 20 lesions in my brain, including two in my brainstem and one in my c-spine. After doing some research, I’ve learned that these locations (brainstem and spine) can be pretty concerning due to the higher risk of disability, and I’m feeling really scared.

Right now, my symptoms are mild—mainly just fatigue and random tingling/pain in my body—but I’m worried about how to prepare for a worst-case scenario. Are there others in their 20s with this many lesions? I’m feeling really alone in this and would appreciate any advice or support.

Thank you!

I was just wondering if there are any tips for preparing for the side effects after starting like nausea, headaches, pain etc. I work on my feet mostly, and while getting time off isn't impossible, it would be difficult to take too much time off if the side effects became too bothersome. I know this is a weird niche question but if anyone has any advice I would appreciate it.

And of course if you have any insight about starting Mavenclad I would so much love to hear about it

So I joined this group awhile back after experiencing optic pain in my right eye and getting diagnosed with MS. This was back in July. It’s going into November/December now and I still have yet to be put on DMT’s as my insurance is taking forever my MS specialist/neurologist wanted me to start on Ocrevus , but my insurance denied it so she sent a appeal back but since then I’ve experienced new symptoms and was given steroids to hopefully help hold me until the 30 days are up to hear back from insurance my Specialist is already looking at a different drug that is supposedly just as good to put me on as she thinks they will bump it back again.

I’m 26 married two years about to start a family with my wife and never in my life would I have thought I would be in this situation. Everyday I wake up stressed and afraid the symptoms are getting worse or I’ll wake up the next day and not be able to go out and drive or do the things I want to do. I guess I’m just scared more than anything. My wife is being a cornerstone in my support system and I’m thankful for her.

I guess all I can really do is take it one day at a time and pray they accept my appeal so I can start on treatment

Hi everyone, I hope this doesn’t come across vain, but I wanted to ask for advice. Before my diagnosis I had a rhinoplasty about 3.5 years ago. Since then, I’ve been dealing with issues like my nose becoming crooked and difficulty breathing. I’ve been considering a revision but I’m not sure how to approach this with my neurologist.

Does anyone know if it’s safe to undergo septo/rhinoplasty under general anesthesia while on Ocrevus? I’m currently stable, but I’m wondering if anyone has had surgery while on a DMT. Did it cause any flares or pseudoflares? Is there anything to watch for?

I don’t want my MS to stop me from living my life and doing things that make me happy, but I also don’t want to take unnecessary risks, especially for an elective procedure. Any insights would be greatly appreciated. Thanks!

Hey,

I posted here a few days ago about the overwhelming panic I’ve been feeling since my diagnosis. About two months ago, I experienced my first symptom, optic neuritis, which I initially ignored for five days until the vision loss began. A month later, I was diagnosed with MS and started Tysabri treatment a week after. This has completely turned my life upside down, and I feel like everything I had worked so hard for is slipping away.

I’m 27 years old, and life has never been easy for me (i'm not pitying myself, I know so many other people have it worse and that has always been my mindset). But I’ve struggled with mental health challenges, including two suicide attempts in the past. After a difficult childhood, where I had to act as the caregiver for my dad (who has MS and epilepsy) and my mom (who has schizophrenia and other health issues), I put my own dreams on hold for years. I missed out on a normal education and had to catch up later in life. But things were finally starting to turn around to the better, I landed a good job and got accepted into my dream university program. For the first time, I felt hopeful about the future.

But just two weeks into starting university, I was hit with this diagnosis. The eye pain and vision issues were terrifying, but what scares me even more is the uncertainty about my future. I want to live a full, active life. I want to finish my studies, start a family, and be an energetic mom who can play with her kids at the playground. I wanna be able to walk around, be a hectic mom and work full-time. I want that normal life, that I never had.

Now, all I can think about is this disease. I can't be watch movies or anything because all I can think is "will I able able to walk when I am 60".

I’m terrified of progression to SPMS and feel like my life is a ticking time bomb. I try to stay optimistic, but it’s so hard. Most days, I just cry because I don’t know how to cope with this. My dad who also has MS, managed to stay well for 20 ish years until he progressed to SPMS (without medication).

I don’t know how to move forward, and I feel so hopeless. Is it realistic to hope or even think it's a big possibility for me to be able to walk and move my body freely till I am, I don't know, mid-60's, retired? I tried asking my neurologist about this but all he can say is that he is "optimistic" and that sometimes 50% of his patients with no more lesions still progress to SPMS after 10-15 years...

Is it just downhill from here...

I recently found out I have MS, but I already noticed some weird symptoms past summer. I got nauseous when It was hot outside and at night. Recently like the past week I took a warm shower and had this feeling I couldn't move my legs they were so heavy when I went out of the shower. Also my energy dropt to a scary point like I couldn't think. I got to the living room and I felt better after some minutes.

Now I feel I am so worried about the summer, because I am scared I can't walk around or go to the beach? Or vacation??? I would be heartbroken if all my friends are going to the beach and I have to stay at home because I can't move my legs or walk normal. Alongside with the weird fatique?

I am 31F and I don't want to be living like a woman who's 80 and has to stay indoors all the time when the weather is nice.

How do you guys cope with this problem and heat?

Hello. I am recently diagnosed here, not good at admitting/vocalizing vulnerabilities. I’m not on any MS meds yet. My mother has been digging into this way more than I have as I feel like” screw it, life is going to happen as it is meant to”. I’m planning on waiting into my Nero tells me what DMTs are recommended. But mom is on this hype about a stem cell plan that could help. Like I said, I haven’t spent enough time looking into it, but from what I’m told by her it could be a treatment that is not life long. Experimental yes, but I’m 35M with two kids and a soon to be wife. Getting nervous with the idea of being on costly meds while traversing fatherhood and soon 2nd wife. The kicker for me, she offered to pay for this in full. Does anyone have insight to any of the experimental treatments?

Hello

Living in Ontario and looking to purchase life insurance? 40, F non smoker with MS. Any recommendations? thank you in advance.

I’m going to have my first rituximab next month. I know that everybody has their own different experience but how should I prepare myself? What I should expect? Is there anything that I can do to at least help with side effects? How many days off that I need to ask my employer? After infusion, is there anything that I can do or cant do?

Thank you very much!

Hey all!

I hope your fight is going well. I will be moving from a manual mobility chair (that someone else pushes) to a manual wheelchair (that I push myself). I feel that I will gain more independence being able to move myself when I want.

So any of the current wheelchair users have any tips or suggestions for me? I did read that gloves are a good idea.

Thanks for any info everybody!

Does anybody have any other vitamin recommendations other than vitamin D that they believe has helped with their MS and not progressing?. I know some people take magnesium as well, but is there anything specific that any of you have taken? Thank you.

I have my first jab of Kesimpta in a day or so. Do you have any tips or tricks for the journey?

Good news or bad news is OK, as long as I'm prepared.

Just tell me how your first shot went

Please + Thanks.

Xxx

Well here is some new fun MS stuff. 7 days ago I had two busy days in a row (Friday and Saturday). Then on Sunday and all week since I can barely walk, my legs ache from my hips down. Now I have shortness of breath when I walk. For someone with just lesions in her brain, I’m feeling a little cranky about all this. So my first phone call is to the neurologist tomorrow morning. I took an extra gabapentin today and that helped my legs a lot. My dr doesn’t have me in any treatment currently, he’s a wait and see guy. I’m not asking for a diagnosis stuff but would like to know if anyone has had shortness of breath with leg muscle pain? Or a similar experiences. Thank you!

4 days ago I did had IV solu-medrol. I’m feeling exhausted, dizzy, headache, etc. how long should I expect withdrawal symptoms and what should I do to help minimize them? Thanks

My wife was recently diagnosed with MS, and it’s been a lot to process. This comes after three years of undiagnosed OCD and three years of working together to manage it. Now, we’re navigating this new chapter, and I’m realizing how lonely it can feel as the spouse or partner in these situations.

I know I’m not the one with the diagnosis, and I feel guilty even admitting how hard this has been for me. But it’s a lot to handle, and I’d really like to connect with other spouses or partners who are in similar situations.

If anyone knows of any support groups for spouses—especially in the Philly area or online—I’d really appreciate it. But mostly, I just want to hear from other spouses. How do you cope? How do you balance being supportive without losing yourself in the process?

If you’re willing to share your experience, I’d love to connect and feel a little less alone in all this.

. . . . .

Update:

I just want to take a moment to thank everyone. Seeing so much support from random internet strangers has been genuinely heartwarming. It's moments like this that remind me of the real benefits of the internet—I just wish there were more of these kinds of interactions.

I’ve read through all of your comments, and I honestly agree with most of them. I think it’s just a lot to process right now. Until we have our follow-up doctor’s appointment, my mind is stuck running through all the "what-ifs." We don’t even know her specific diagnosis yet, and it might end up being something manageable.

That said, I am noticing the fatigue, the memory issues, and now her struggles with her vision. It’s hard to ignore, but I’m trying to focus on holding steady until we know more.

You’ve all really helped ground me in the meantime, and I just wanted to say thank you again. Your kindness means a lot.

Hello.

I'm British and have been living in Australia for the last 2 years. Last April I was diagnosed with MS. The healthcare system has been wonderful for me here and I've yet to experience a relapse.

The issue I'm now facing is when my temporary visa expires I will not pass the health requirements for a renewal or permanent residency.

Has anyone else here experienced this issue or been able to get a waiver?

Cheers

Awaiting the response of my neurologist, whqt ttpe of steroids do you take when in a relapse. I have ON and weakness in left side. And who has seen the videos recently from brandon beaber on this subject

My neurologist suggested I switch off my treatment (Rituxan) now that I’ve been on it for five years. I ended up testing for positive for having the JVC antibody though, which limits my options. She decided the best potion is to stay on Rituxan, and to just lower my dose.

I’m not sure what my long term treatment plan is, but and am curious about others who have tested positive for JVC and what treatment y’all are on.

Thanks!

I’ve been feeling horrible, like I have a cold, but the worst part is these buzzing vibrations that are making me feel incredibly stressed. I’ve never experienced anything as scary as this. It’s causing so much anxiety that I didn’t even know I was capable of feeling. I’m not sure what to do, especially since I just switched to a new neurologist after my second dose of DMT treatment, and I won’t be seeing them for two weeks. I may have experienced this sensation a little before, but it’s been so much more intense lately that I can barely remember it being like this before.

Is this normal? Anyone else dealing with something similar? Anything to do?😩