Mine was being constipated two days in a row. I thought it was from the KFC that I ate during the 2024 Super Bowl.

It turned out that sitting on the toilet too long, that Monday, that I'd never feel my toes again!

Now, I can't feel much from the waist on down!

I’m twenty, I just got into a new romantic relationship, and the excitement and extreme positive emotions seem to be affecting my MS symptoms in a way similar to how stress does. The most notable symptoms are a slight vision blur, majorly increased tremors, and tingling in my hands and feet that comes and goes. These are all what I would expect out of being very stressed, but it’s definitely not from stress. I can only think to tie it to my new relationship because the symptom onset corresponded so closely.

I’ve looked for anything about positive emotions acting like negative ones on MS, but have had no luck. Does anyone else experience this? Does anyone know of any research done on a similar topic?

Every day I see posts about folks in the US not getting what they need because of insurance issues, Medicaid cuts, etc. I myself lost my NYS healthcare because of federal budget cuts. It boggles my mind that the National MS Society does not advocate for universal healthcare. Can anyone explain why? How can we influence them to support this kind of legislation, like Medicare for All? I think this is one of the single most important issues facing those of us with MS and I am enraged that they don’t understand that.

I’ve been severely depressed ever since my diagnosis. Sometimes I feel like I’ll never be happy again. I feel so upset about all the changes I’ve had to make. Trying to advocate for myself to get treatment is exhausting. I started a new job and hate it. I feel so upset I can’t work outside anymore. I feel so lonely and don’t have anyone to talk to about how I’m feeling. I know I probably need to go back to therapy but my insurance sucks right now. I’m tired of being so miserable and feel like it won’t get better.

So, I’ve been talking to my neurologist about how bad my fatigue has been lately. I did many labs and basically ruled out fatigue from any other factors. It doesn’t matter how much sleep I get, it is so hard for me to get through the day. My neuro just prescribed me amantadine as it has the lowest risk. I’ve been taking it for a couple of days, haven’t noticed a huge difference yet. I am wondering what other people have been prescribed for MS fatigue, and if so, how is it working for you? I understand most of it is off label since there isn’t an exact med to fix this.

My psychologist told me a while ago that he had looked at my MRI scans and noticed two lesions in my frontal lobe, which he said could potentially affect emotions and emotional regulation. Apparently, some people may become more indifferent, while others may become more prone to overthinking.
I’m currently seeing a psychologist who has recommended antidepressants, but I’m hesitant to take them because I’m generally a happy, energetic person. My main struggle is health anxiety, overthinking, and constant rumination.
I find it difficult to truly relax and enjoy being happy because there’s always a part of me that’s afraid something bad is going to happen. I think a lot of this stems from my childhood, growing up with a depressed mother who struggled with alcohol. I feel like I’ve developed a habit of constantly anticipating the worst, even when things are going well.
For those of you who also struggle with overthinking, anxiety, and rumination, have you managed to overcome it on your own, without medication? What has helped you the most?
And for those living with MS, do you feel that MS has contributed to increased anxiety or made your overthinking worse?
I’d really appreciate hearing about your experiences. ❤️

Hello lovely MSers! ❤️

I haven’t been around here much lately. I’ve been taking a bit of time out to get my head around this whole MS diagnosis thing, and just trying to process everything that’s changed. I think sometimes you need to step back for a while.

But I wanted to share my experience of applying for a Disabled Persons Freedom Pass, particularly the face-to-face assessment, because when I was searching Reddit, I couldn’t find much about what the assessment itself was actually like. Hopefully this might help someone who’s going through the process and feeling as anxious as I was.

First, a bit about the eligibility criteria
Although we tend to refer to it as a TfL Freedom Pass, the Disabled Persons Freedom Pass is administered through London Councils, with individual boroughs responsible for assessing applications.

The main statutory eligibility categories are:
Blind or partially sighted.
Profoundly or severely deaf.
Without speech.
A disability or injury that has a substantial and long-term adverse effect on your ability to walk.
No arms, or long-term loss of the use of both arms.
A qualifying learning disability.
A medical condition that would mean you would be refused a driving licence on grounds of physical fitness.
There are also provisions for discretionary passes in exceptional circumstances, depending on the borough.

The official criteria are here if you want to have a read: https://www.freedompass.org/apply-pass/disabled-persons-freedom-pass/am-i-eligible

The application
The online application itself was fairly straightforward. A few boxes to tick and questions about how your disability affects your mobility, including how far you can walk, whether you need to stop and rest, how long it takes you to recover, and other things such as breathing.
Honestly, some of those questions were almost impossible to answer accurately. How far can I walk? Well, it depends! What sort of day am I having? How heavy are my legs? Am I having problems with my balance? How much energy have I already used up?
MS doesn’t exactly lend itself to neat little boxes and straightforward answers, does it?!
I submitted a supporting letter from my MS nurse, explaining how MS affects my mobility.

The waiting and the anxiety 😩
I was then told I needed a face-to-face assessment because there wasn’t enough evidence to make a decision either way.
The communication around this was, frankly, really poor. The email gave very little information about what would happen, what the mobility assessment involved, what I would be asked, or who would be carrying it out.
Would it be an occupational therapist? A physiotherapist? What exactly would they expect me to do?
I couldn’t find the answers, and the lack of information made an already difficult situation so much worse. The whole process left me feeling as though I had to prove how disabled I was.
I appreciate that they have criteria to follow and need evidence to make a decision. I understand that. But a little more information, a bit of reassurance and some empathy in the communication would make such a difference.
I was already dealing with a relatively new MS diagnosis, trying to come to terms with it and learning to understand my body all over again. Having to prepare for an assessment where I would need to explain my limitations to a complete stranger was incredibly daunting.
My anxiety got to the point where I genuinely considered cancelling because I thought, is this really worth all the hassle?
Thankfully, I asked my lovely friend Debbie to come with me for moral support. ❤️

Preparing for the assessment
I contacted my MS nurse again and asked for an updated supporting letter. I also kept a mobility diary for roughly two weeks.
It wasn’t every single day because I don’t leave the house every day, but whenever I went out, I recorded:
The distance I walked, using Google Maps to estimate it.
Roughly how long it took me.
What symptoms I experienced, including heavy legs, pain, fatigue, spasms and problems with balance.
Whether I needed to stop and rest.
How I felt afterwards and how the journey affected me.
Some of my journeys were surprisingly short, but the impact was significant. A distance that Google Maps suggested should take a few minutes could take me considerably longer, followed by needing to sit down and rest.

My biggest tip: if you have an MS nurse, ask them for a supporting letter that explains how MS affects YOUR mobility.
A diagnosis on its own doesn’t necessarily explain the practical impact of the condition. Ask them to cover things such as:
Fatigue and heavy legs, even after relatively short distances.
Balance problems, unsteadiness and falls risk.
Pain, spasms and difficulty lifting your feet.
The need to rest and how long recovery takes.
How symptoms fluctuate, making your mobility unpredictable.
The knock-on effects later in the day or even the following day.
We all know that a good day doesn’t mean the problems have disappeared, and a bad day can’t always be predicted in advance. I think it’s really important that this is understood.

Take any mobility aids you use, too. I took my walking stick. I don’t use it every day, but if I’m going out for the day or know I’ll have a fair bit of walking to do, I usually take it. It helps enormously with my balance and stamina and gives me a bit more confidence.

The actual face-to-face assessment
And here’s where things got much better!
The assessor was an occupational therapy assistant, and she was absolutely lovely. She reassured me almost straight away and was empathetic, kind and understanding.
I explained how vulnerable I felt. This diagnosis is still relatively new, and I’m still coming to terms with the changes in my body and accepting what I can and can’t do anymore. Sitting opposite a stranger and talking about all of that, when you’re still processing it yourself, is quite a thing.
She completely understood.

We went through questions similar to those on the original application. I gave her my mobility diary and updated MS nurse letter, and she scanned the documents into my assessment.
She also asked what having a Freedom Pass would mean to me.
For me, it’s about maintaining my independence. Before my relapse and diagnosis, I was a great walker and a speed walker! I’d happily walk places rather than catch a bus or train. That’s changed considerably.

Now, I need to think about how much energy it will take just to get somewhere. If I’m going to work or travelling to meet friends, I don’t want to have used up half my energy getting there before I’ve even arrived!
It’s not simply about convenience. It’s about being able to save my limited energy for the things I actually want and need to do, rather than exhausting myself just getting from A to B.
Where I live, we also have very limited step-free rail access. Sometimes I have to travel into central London and then back out again just to avoid a huge number of stairs and steps. That adds time, distance and cost to an already exhausting journey.

And then came the mobility assessment itself.
We went outside the building and walked a very short distance before returning to the office.
That particular day, my legs were extremely heavy and not behaving themselves at all. My knee also gave way.

I remember thinking, well, if my knee’s going to give way, at least it’s picked a useful moment! 😂

She didn’t ask me to walk very far at all. We came back inside and finished the assessment.
I had been so worried about this part, imagining all sorts of things, but it was genuinely manageable. I can’t promise everyone will have exactly the same experience, of course, but I wanted to explain what mine involved.

So, what’s the outcome?
I’ve had confirmation today that I’ve been awarded my Freedom Pass! ❤️
I’m relieved that it’s over, incredibly grateful that I’ve been successful, and also feeling a little strange about the whole thing.

I’m not sure how I’ll feel the first few times I actually use it. There’s something quite confronting about having to acknowledge that the things I used to do without a second thought now take so much more out of me.
I’m still learning to accept that this is where my body is right now. I suppose getting the pass is another little reminder of that.

But I’m also trying to see it for what it is: a way to help me maintain my independence, conserve my energy and keep doing the things that matter to me.
And that’s a good thing.

My takeaways if you’re applying:
❤️ Ask your MS nurse for a supporting letter explaining the actual impact on your mobility.
❤️ Keep a mobility diary, even if it’s only for a week or two. Record distances, timings, symptoms, rests and recovery.
❤️ Take any walking aids you use, even if you don’t use them every day.
❤️ If you can, take someone with you for support. I’m so glad Debbie came with me.
❤️ Be honest about your difficulties, including the variability of MS. You don’t need to minimise things because you’re having a better day, or feel you have to perform being disabled.
❤️ And please don’t assume that being asked to attend an assessment means you’ve done something wrong. In my case, they needed more evidence to make a decision.

One final caveat: this was my experience with a London Council and the London Freedom Pass process. Other London boroughs may handle things differently, and the process will be different outside London.

I hope this helps someone who’s sitting there worrying about an assessment, as I was. The uncertainty and the poor communication made the lead-up much harder than the assessment itself.

If you’re going through this at the moment, sending you a big hug. It’s hard enough navigating a new diagnosis without having to navigate systems like this, too.

And thank you to everyone here who shares their experiences. Sometimes just knowing you’re not the only one trying to figure all of this out makes such a difference. 🧡

[TW: the below is pretty bleak. You have been warned.]

I've always lived a fairly sedentary life. From the early 1980s when the first became possible to sit in front of a screen all day, that's where you could find me. I've always eschewed physical effort, and I almost missed graduating from high school because of refusal to take a required PE class. 

And now? 

As my disease has progressed, I've kept a mental list of "things I'll never get to do again." It's a long and depressing list. I used to love flying a single-engine plane. Never again. I used to love reading paper books. Never again. I used to love playing the latest AAA video games. Never again. Driving? Definitely never again.

But physical activity? Never loved that. Can you imagine how heartbroken I would be if I had grown to love doing jumping jacks or bench pressing heavy weights or any of the million other exercises I couldn't do if I wanted to. 

So thank goodness I never listened to all the well-meaning loved ones who warned me to exercise more. If I had, that would have just been one more thing that MS would have taken from me.

There is someone on the new season of Love Is Blind who has MS. This week there seems to just be so much MS in the media.

Hopefully this guy doesn’t make us look bad…unlike….you know….a bad actress haha.

So back story: I was diagnosed with MS at 17, my exams were around the time and I did horribly.

I looked at courses that looked within my grade range and looked at nursing. It was CCC at the time and I had that. Went to college. Got into uni. I graduated and then left after a year. Stress, bullying etc.

I started uni at 26 again and I am in my penultimate year and worked so hard for this degree. However, I know I fucked up my life being so behind everyone else and it’s just a constant feeling that I can’t shake. It just feels like a bad move on every decision from the diagnosis and I feel like I should have done better.

I just can’t help but feel like such a loser for not having it together. And now at 29, I struggle to walk for long distances and overall, it’s just such a crappy experience

Hi everyone. So I've been having pack pain for a little while now and it comes and goes. It's all down my back and shoulders. The pain seems to be getting worse with time, and it's making it difficult to sleep or do anything. I spoke to my ms nurse and she said it isn't ms and to speak to my gp. I was referred for physical therapy and I've been doing the exercises, or have been trying to but the pain is severe, but it's not helping. They refuse to send me for a scan, because "it's just back pain". I'm not sure what to do 😕 could this be ms or could it be something else? Thanks.

Soooo thanks to some major issues with my insurance, I am not able to get my usual infusion of Ocrevus that I've been on for 8 years or so that has been working really well with no side effects.

In the meantime, my neurologist wants me to take Kesimpta to avoid a relapse. I have had MS for 20+ years and have taken many DMT's over the years but I have never had to give myself a shot in any way.

Because I'm off schedule, I haven't been medicated since my last dose of Ocrevus wore off and my next infusion was supposed to be in June. I'm definitely feeling it and it's not fun.

Tell me your experiences with Kesimpta, any tips, tricks, things you've learned, little known things etc. I'm super new at this 'injecting myself' thing and I need all the help I can get.

I feel like it's akin to convincing myself to punch myself in the face with a brick...anxiety 😣

Thank you ❤️

Newly diagnosed MS person, but not new to fatigue. I'm at a conference, which usually kicks my ass fatigue wise. I pushed myself too hard today by not taking a break at lunch and ended up falling asleep during a close colleague's talk. I'm sure he noticed because it was a smallish room.

Now that I know this is an MS thing, I'm wondering if I should just be honest and apologize/explain why I crashed? Or should I just pretend like nothing happened?

He is my peer (not senior staff) and a really chill guy, I'm sure he'd understand. I just feel frustrated that I can't fully participate at a conference because of my fatigue

I'm 27 and just got diagnosed with RRMS but I've already been struggling with BPD since childhood and currently it is the worst it has ever been. I'm struggling to see a light at the end of the tunnel so I have no interest on going on any treatment because what's the point if I don't have a life anyway. I'm having a relapse at the moment that just won't go away and I assume that's because I'm having about 7 mental breakdowns daily. Its so bad that I'm going to tell my nurse to discharge me from my ms team because there's no way I'll be able to commit to treatment when I actually just don't care about it at all. I'm just so angry because I'm getting all this help for ms but never got this level of care for my mental health especially when that's what will actually kill me in the end. I don't really know why I'm posting this, I'm just so sad, I have nobody to talk to, I'm dealing with all this by myself.

Would I be allowed to just discharge myself or do they have to monitor me indefinitely?

Hi! TLDR as above really, I'm struggling with fatigue and unsure whether taking some time out to recover is better than trying to push through.

The long version...

Possibly important context: I'm not currently on a long term preventative treatment (long reasons, not going into it here, but hopefully starting soon). Also I'm still pretty new to all this in the scheme of things. I've been lucky that my health has been pretty good up until recently, aside from some vision issues. So this is a new thing for me to figure out but I'm sure you've all got loads of experience!

I moved house (relocating to a different area) over the summer, things got super stressful (I have two very young kids, one neurodivegent, and it was all a lot). Very soon after the move I ended up in hospital with numbness in my arms and other symptoms. A few small lesions in my brain and spinal cord were found on MRI that we hadn't known about before. The lesions were not acute at the time of my admission. My team suggested that stress had made this start acting up even though the original damage had apparently already occurred before. My symptoms were stable, I was medically fit for discharge, and I wanted to get home to my children, so they let me go.

When I got out of hospital I was feeling behind with work; I'd used a lot of annual leave around the relocation and had a couple of big projects on the go. I work for government so it's not like I'm just making money for a shareholder somewhere! I don't love my job but I love my colleagues and I like making a difference. It's also my time for doing the "me" stuff rather than managing (or failing to manage) the children. So anyway I tried to work (from home) the day after being discharged from hospital. This was clearly a mistake, I fell asleep at my laptop three times that day. I had nausea and vomiting. I then took two days off, then a weekend where my family came to stay and help with the kids, and felt much better.

Since then, I've been trying to work "as normal" (still from home, haven't attempted the office yet). I'm struggling a lot with fatigue. It hits most days. My children are still adjusting to the move (well one of them at least), they are really hard work at this age, and by the time I've dropped them off at childcare I'm already a bit drained. But then I have a 30 minute break and a cup of tea and then for about 2-3 hours I feel OK to work. Then it hits me. I just feel like my body is screaming at me to sleep. I can't work properly, I stare at my laptop and zone out in meetings. I also just don't get enough sleep generally because of the children.

What I'm unsure about is if I take some sick leave from work, and try to rest a lot (and catch up on life a bit as well - still not really sorted following the move), will this be helpful? Or would I just find myself going back to work with exactly the same fatigue issues but now even more behind with work? I'd feel guilty being off work while sending my kids into childcare, but that's what it would need to be if I were to rest. My manager is really kind and will take the lead from me. I'm in the UK and sick leave is relatively generous so not worried about that really. The problem is i don't know what's for the best. I grew up in a family where the attitude is that activity and exercise are billed as the answer to literally everything and giving in to tiredness just makes you lethargic. So that's my default I guess. I'm just not sure if this applies with neurological fatigue! But indeed I sometimes feel like resting doesn't make me feel any less fatigued. At the moment I feel like I'm in the worst of both worlds because I'm not resting but not working well either.

Any of you who've done some trial and error around fatigue and rest, what do you think?

Hi, my dad (late 50's) was recently diagnosed with MS and possibly Marburg MS?

Back in march he got his first MRI after having headaches and vision problems (which have progressively gotten worse) they said it was likely caused by a stroke, then in June he got another MRI, they now said it was a brain tumor. He got another scan in September to which he got the diagnosis of Multiple Sclerosis. However on his paperwork it says "Marburg acute multiple sclerosis" from my research Marburg would be treated more as an emergency that someone would be immediately hospitalized for? If anyone has anymore information on Marburg from their own personal experiences, or any idea why that would be on his paperwork, I would love to hear.

I am newly diagnosed with MS, and around the time I was learning that I have this disease, I was also in the process of getting referred to a psychiatrist for some harmful behaviors I suffer from. I’ve now met with the psychiatrist, and he said he sees a correlation between MS and psychological issues. After hearing about my issues, he started talking about treating me for obsessive compulsive disorder. I’ve suffered from these behaviors my whole life, and now that he named it, I can see very clearly why this is OCD - however, it had never really occurred to me before. I associated OCD with verbal and physical tics, which is not really what I have. I find it somewhat relieving to finally have a name for these issues. Anyway, the psychiatrist prescribed me fluvoxamine, which he said has been studied for its positive effect on patients with MS who have psychological symptoms. It’s also regularly used for OCD. I am hopeful it will help me. Just wondering if there are others out there who suffer from OCD and MS. I am seeing mixed options online about whether MS caused these issues or whether these issues are just more likely to occur in people with MS because of how our bodies respond to stress, or because we are stressed/depressed because of the disease. Would be interested to hear opinions.

Wishing everyone healing ❤️

I was diagnosed this year and will be flying home for the holidays in December during cold and flu season. For those on immunocompromising treatment, do you guys mask up for flights?

I’ve struggled with scalp psoriasis for many years and now that I’m on Ocrevus, I can’t take any of the biologics they prescribe for stubborn scalp psoriasis.

Does anyone also deal with this? Currently the only thing that works for me is the clobetasol solution but I’m not interested in using a topical steroid solution twice a day for 2 weeks on and 2 weeks off indefinitely. Anyone have some over the counter remedies that work for them and are MS friendly?

Thanks

Legs are more wobbly than usual. It's extremely busy at work. I was on a ladder at top rung pulling product. I stopped for a moment and closed my eyes. I had the strongest urge to just fall backwards and be done with this. I never had an urge/feeling like this. Needless to say I opened my eyes and went back to work.

The answer for me is underwater. I scuba dive.

Hi everyone! I'm Adriana, and I live with primary progressive MS.

On land, every step takes effort and planning. Underwater, gravity lets go. I'm weightless, it's quiet, and my body moves in ways it can't up top. It's the closest I've come to feeling free since my diagnosis. MS took my legs on land, but it gave me a tail in the water. That's how I became the MS Mermaid. 🧜‍♀️

I've seen a few posts here asking whether it's possible to scuba dive with MS. For many people it is, with medical clearance and the right adaptive support.

I recently started a nonprofit, Diving Beyond MS, as a resource for people with MS who are curious about diving, and for dive professionals who want to learn how to teach divers with MS. I also share my own adaptive dives to show what's possible.

Every person's MS is different, so it's worth talking with your neurologist and a dive-medicine physician before getting started.

Nonprofit: divingbeyondms.org

Instagram: @diving_beyond_ms

The MS Mermaid's Instagram: @mymsmermaidlife

For other people with MS: what's an activity that gives you that feeling of freedom?

And if diving has crossed your mind, I'm happy to answer questions here or by message!

Has anyone experienced nighttime confusion and/or wandering?

I often find my partner gets up to go to the bathroom but ends up wandering (mainly upstairs rooms) and says the strangest things when asked what he’s doing.

Interested if this has happened anyone else.

I have RRMS and over the past few weeks I’ve been experiencing severe burning, pins and needles, and numbness in both my hands and feet. My hands have also been swelling, and I’ve recently started losing sensation in several of my fingers. The burning got so bad skin on tips of a few of the fingers started to peel (like after you get a third definitely burn). My
Primary doctor did say although weird MS can cause this.

The burning is extremely intense. The closest comparison I can make is how I feel when I get overheated with MS, except about five times worse. These symptoms happen without any obvious trigger, although heat makes them worse.

Working with primary doctor to figure things out and he actually wants to evaluate peripheral nerves by sending me a referral to get a test.

I reached out to my neurologist, and he mentioned that my symptoms seem like they may be refractory to treatment. He suggested trying alpha-lipoic acid, following a strict Whole30 diet and considering whether my gallbladder could be contributing to the symptoms. Since I postponed surgery because of this situation. He also mentioned that continuing to adjust medications might not provide lasting relief.

Has anyone experienced anything similar with MS? Also not sure how your Nuero would handle this but mine didn’t even want to check me out which is concerning to me a little not sure if I am just being to sensitive though.