r/MultipleSclerosis

I don't recall seeing this in typical symptoms. I call it "fire skin". A section of my body, typically arms or legs, will feel as if they had been burned. The skin looks fine, but it is sensitive to the touch. Right now I have a patch of it on side of my arm; about the size of my hand. Often I will get it on my thighs. At its worst, it was nearly half my body and I had to beg my kids not to touch me.

I have had this for days. People don't understand what "invisible" illness is like. I look like I should be fine. I am expected to function, but the pain is overwhelming.

It’s been a long time since I last posted here. I know this journey has its ups and downs, but right now, I’m facing a significant down.

I’m officially one year out from my diagnosis, and the feeling that "nobody cares" is getting intense. No one asks how I’m actually doing anymore. When they do, I get the typical: "You’ll be fine" or "I feel the weather/get tired too."

Lately, I just don’t feel like myself. Whenever I’m outside walking through the city, everything feels "off." I can’t quite put my finger on it,I don't know if my vision has changed or if my health is just slowly declining, but the world feels different.

Nobody understands what I’m talking about because they just see a "sporty young man." I’ve never felt this lonely or anxious in my life. As a guy, it feels especially hard to talk to friends about this. The last time I tried to open up, I mentioned being mentally exhausted and that my legs felt heavy/off. My friend just laughed and said, "Haha, at least you can skip leg day."

It feels like nobody takes this seriously because I don't "look" sick. I'm struggling to navigate a world that looks the same but feels completely foreign now.

Has anyone else dealt with this "off" feeling in public spaces? And how do you deal with the isolation when your friends just don't get it?

One of my major problems related to MS is terribly restless legs at night. It’s not every night, an it’s almost always if I fall asleep for a few minutes and suddenly awake. I awake and my legs are so bad I just cannot stand to keep them still. It {almost} feels like the feeling is coming straight from my lower back. I’ve had it for years and tried every medication known to help. What DOES seem to provide me with SOME relief and usually the ability to get back to sleep is placing a TENS unit on my lower back. I’m not sure if the “electricity” helps diffuse the nerves feelings or what- but just thought I put this out there in case it might help someone else with nerve pain or restlessness. This is NOT medical advice- none of my providers recommended this- just something I found personally that worked. They HAVE told me it will not hurt in any way TO use the unit in these cases. Has anyone ever had similar situation (restless legs seeming to come from lower back)? And if so- what helped you?

Started to feel that at the grocery store:(

I’m curious to know how many of you are on Gabapentin. Opinions, how old you are/were when you started It and pros and cons would be great. I’ve had MS for about 5 years now and my doctor is pushing for It for quality of life but I’m scared to start It due to side effects and being so young, I’m worried about how much I’ll need later on. They are 100 mg to start. Most of my irritating symptoms are muscle spasms and leg pain.

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I’m a 29/F, got diagnosed February 2025 during my second relapse, and after a little over 4.5 years of symptoms and my mind has changed so much about having my own and even possibly adopting kids. My life has been completely rocked (I know all of ours have). All the years in college, basically wasted. All the years I’ve worked to get into a career field that I physically cannot do when after I get out of an episode. Everything has changed from me being super independent, not relying on anyone to being insanely, depressingly dependent on people. It has made me realize how much more I need from a partner than I initially thought I would ever need, which made me really re-evaluate the relationship that I was in and realize it’s not what I need.

It’s so frustrating because surprisingly the only person that supports this is my mom. She’s been here for me non-stop the last five years and has seen it all, and knows how hard this has been. All my friends thinks it’s crazy, but I don’t. My “triggers” have been two car accidents that led to TBIs, which pretty much within two days of both, started having syncope episodes, gastroparesis, migraines out of this world, as well as pain I’ve never felt before, fatigue that makes everybody call you lazy, and the rest of the laundry list of issues. Knowing it’s hereditary, and with my only known trigger being a TBI, I know that I have no control over preventing a trigger. I feel like it would be so selfish of me to have a child, they develop MS, and I can’t even be there for them the way my mom has been because what if I’m in an episode? Or the disease has progressed enough that I can’t walk and function alone already? Also, not to mention that to try to conceive, during the pregnancy, and if I wanted to breastfeed, I would have to be off every medication I’m currently taking for that duration. I see the way my mom looks at me with a broken heart when I’m having a really hard day in pain, not being able to keep food down for days on end, migraines that force you to be shut off from the world for hours or days. It hurts me to see her do all she can and still feel like she hasn’t done enough. She has sacrificed everything. She’s quit jobs so she can take me to all of my appointments, be there to advocate for me when no one would take me seriously, constantly defending me against my family, etc., and she had no idea that this would ever happen. So I feel crazy still wanting kids as bad when I’ve actually lived it.

Has anyone else had a change of heart about having kids post-diagnosis?

I was diagnosed yesterday after many MRI scans, multiple blood tests and a lumbar puncture.

I know I'm lucky to be in Australia where I have free choice of what DMT I can use, and they're either free for IV in hospital or $25 for the home auto Injectors.

I truly understand I'm lucky compared to many especially in America.

But like wtf... I have MS now, does my life change, do I have to change my routines or diet or workout more. I have gone from not caring to angry to the verge of tears, I have a good support group of friends around me thankfully but still... I have MS...

one of only around 9500 men in Australia with it ...I should buy a lottery ticket.

I'm so conflicted. The side effects of these DMTs can be crazy, but I need to do treatment and read the booklets and do research.... idk what my life means now.

side note, without much thought im thinking the monthly auto injector of Kesimpta (ofatumumab) over tysabri cuz of the jc virus risk and the increase chance for skin cancer?

then there is ocrevus vis IV at hospital every 6 months...

any advice would be wonderful because I'm completely lost.

33m. Like most other things about me, this is HUMILIATING to admit. Ive done it since I was a toddler. Whenever I get really overwhelmed, I will punch myself in the head or somewhere else large like my thigh. I have never thought to do it, it just happens. A very impulsive act.

As an adult, there's only been a few times this has happened. However, something has really been stressing me out over the last couple of days, and now I have done it twice. The second time was so hard that I have a few knots on my head and a few knuckles are swollen.

Had to have been several years since the last time I've done this. I dont even recall what happened last time that triggered it. I dont have a desire to hurt myself and always immediately regret it and feel humiliated after I realize what I did.

Is this something I should talk to someone about? Am I just immature? Luckily, I've never done this in front of anyone, but I expect someone to ask about the swelling next time I see them. What the hell is wrong with me?

This disease keeps you guessing.

Life falling apart and I guess even if I’m in pain and can’t see well I’m going have to lie and say I’m okay to work and in the hot sun for 7-8 hours and no light duty and I have people that depend on me

Does anyone else notice specific patterns in the days before a flare? I’ve been paying closer attention lately and I feel like my sleep gets noticeably worse 2-3 days before things escalate. Not insomnia exactly, just poor quality. Curious if anyone else has tracked this or if it’s just me.

I started taking Teriflunomide 14mg on march 19 and right now i am having some uncontrollable hives, on my arms and legs and they itch like crazy. The earliest I can see my neuro is Tuesday and today is Sunday.

Losing my mind and having panic attacks because I am scared I will not see Tuesday. It is almost 6 in the morning as I am writing this, and I hope someone sees it and tells me that I am not gonna die from an allergy reaction to this medication.

TLDR: Having hives probably due to Aubagio and being anxious about them, please help me calm down by telling me that these hives won't kill me till Tuesday(when I see my neuro).

Hi everyone. I’m posting because I’m honestly really scared and don’t know what to do.

Over the past few days my legs have been getting weaker and weaker. It started with them just feeling weak and shaky when I walked, but it has been getting worse every day. Now when I try to stand, my legs shake a lot and I can barely put weight on them.

I can still move my legs, but standing and walking is really difficult. There’s also back pain and my legs hurt. Earlier I could still get around a bit, but now it’s gotten to the point where I can't walk.

This has been progressively getting worse, and that’s what’s scaring me the most. The weakness and shaking when I stand is really intense.

I’m really anxious about going to the hospital, but I’m also worried about what could be causing this. Has anyone experienced something like this before?

I’d really appreciate any advice or experiences because I’m honestly pretty scared right now.

I haven't been diagnosed but they're suspecting Ms.