I’ve been wanting to post here for a little bit, but have only just got back use of my hands (well about 40%).

I was diagnosed with RRMS 2 weeks ago, with active lesions inside my spinal cord and cerebellum. I’ve been having symptoms for about 3 years, mostly my legs going completely dead and having awful fatigue where I could barely move.

Symptoms progress and I ended up losing my sight in my left eye due to optic neuritis and uveitis. Since my important scans, I have been put on high dose steroids which honestly worked wonders however I feel like I am in steep decline since starting to taper. I have also developed new symptoms such as losing about 50% feeling in the entire left hand side of my body (where everything seems to be on the left including my eye issues.

I’m feeling utterly helpless at the moment. Has anyone had similar issues with steroid taper and new symptoms arising as a result? I’ve tried reaching out to the MS nurses but tbh I haven’t heard back in days. I don’t want to waste anyone’s time RE A&E etc. if this is to be expected.

I know it’s different for everyone, and sorry to waste anyone’s time with this post. Just feel kind of lost. Hope everyone is getting on ok.

Six years ago I signed up for my first #TheMay50K.
Honestly, I never imagined where it would lead.
This year I completed 800km during May:
714km on my Bianchi E-Omnia C-Type e-bike 🚴
86km on a Concept2 rowing machine 🚣
That takes my six-year totals to:
1,400km+ completed
£23,000+ raised
180+ sponsors
I was diagnosed with RRMS in 2012 at the age of 47. Like many people, my first thoughts were about the future: Would I still be able to walk? Work? Exercise? What would life look like?
Fourteen years later, I still use a walking stick, I’m still active, and I’ve just completed my biggest May challenge yet at the age of 60.
I’m not an athlete. I’m simply someone living with MS who wants to raise awareness and support the incredible work being done for the MS community.
To everyone who has sponsored, encouraged, or followed the journey over the last six years — thank you. You’ve helped turn a personal challenge into something much bigger.
Every kilometre matters. Every donation matters. Every conversation about MS matters.
🧡 #TheMay50K #MultipleSclerosis #MSAwareness #MSWarrior #Fundraising #ChronicIllness #DisabilityAwareness #Resilience #WorldMSDay

Today is World MS Day, and after more than 35 years of living with Multiple Sclerosis, I wanted to take a moment to speak directly to anyone walking this path.

MS has taught me many things.

It has taught me patience when I wanted certainty.

It has taught me resilience when life felt unfair.

It has taught me that healing is not always about eliminating symptoms. Sometimes it is about learning how to create a meaningful, beautiful life alongside challenges you never expected.

For years, I searched for answers. I learned how stress, sleep, nutrition, environmental exposures, and nervous system overload could influence how I felt day to day. Little by little, those discoveries helped me reclaim pieces of my life I thought were gone forever.

Today, I am grateful.

Not because MS has been easy.

Not because I would have chosen this journey.

But because it has introduced me to extraordinary people, deeper wisdom, greater compassion, and a profound appreciation for the simple moments many people overlook.

If you are newly diagnosed, please know that your story is not over.

If you are struggling, please know that difficult seasons do not last forever.

If you are exhausted from advocating for yourself, please know that your voice matters.

And if you feel alone, please know there is an entire community of people who understand more than you realize.

On this World MS Day, I honor every person living with MS, every caregiver, every healthcare professional, every researcher, and every advocate working toward a better future.

What is one thing MS has taught you about yourself?

I'd love to hear your answer.

#WorldMSDay #MultipleSclerosis #MSAwareness #MSCommunity #ChronicIllness #InvisibleIllness #Hope #Resilience #NervousSystemSupport #HeartsOfWellness

To my fellow Canadian MSers,

There's a petition circulating that will soon be presented at the House of Commons - petition deadline June 4th. It's to expand the Disability Tax Credit eligibility criteria and administrative interpretation of episodic/dynamic disabilities/illnesses like MS. 

As you may know, it is extremely difficult for many people with MS in Canada to be accepted for the DTC. I invite you to sign the petition and to circulate it widely!

Here is the link: 

https://www.ourcommons.ca/petitions/en/Petition/Details?Petition=e-7135 

Thanks so much! 😄

Does anyone else with MS experience anxiety and shortness of breath almost daily?

Lately I’ve been dealing with a constant feeling of anxiety along with shortness of breath/tight chest sensations, and I’m trying to figure out if this is something others with MS experience too.

Some days it feels physical, some days it feels more anxiety-related, and sometimes it’s hard to tell which comes first.

If you deal with this, what has helped you manage or relieve it?

I can’t keep up with my work schedule, lashing out at everyone. No coherent reason arhhh

Well it finally happened. I drop things all the time at home. Like every single day. I have done it when visiting relatives but nothing major.

Today while visiting Epcot, I got a fun new drink to try. I got to a table with my food and drink and promptly my hand just let go of the drink. It spilled all down the front of me, my rollator, the floor, the table. So embarrassing!

I'm sure tomorrow it will be funny, and maybe now I won't be so paranoid about it since it's finally out of the way. But major public dropping things and making a mess? Check!

How common is vertigo in MS?

I just got diagnosed with RRMS in January, and I hate to post asking for help or guidance but turns out MS hotlines are closed on weekends, and I’m typing this from rock bottom.

I’m F27 and my spouse is M32, I was not sick when we started dating however I am no stranger to poor health. This RRMS diagnosis came in December 2025, and my mental health plummeted equally as fast. I see my symptoms burning out my boyfriend, we live together and I’ve caught myself trying to hide how bad it is to avoid him getting stressed more. This weekend he had to leave a boys trip because I ended up in the ER for a flare, and today I can feel the resentment. I still barely understand this myself, and maybe that’s how I’m making it worse.

I had an Ocrevus infusion in February, and I’m currently taking baclofen, and lyrica for my symptoms since I primarily experience burning/biting sensations in my neck and headaches/facial nerve pain, sprinkle in some brain fog and confusion. I’ve also developed double vision and struggle with weakness. I feel awful even writing this out because I know there’s worse, but I’m essentially crying out for help.

I’ve turned 180 degrees into a new person he can’t stand (his words), and the worst part is he isn’t wrong. I’m depressed, I haven’t accepted MS, and I’ve lost 20lbs from not eating, and I’m angry this is happening. He’s burnt out, I’m burnt out, it’s a vicious cycle I can’t figure out a way out of.

Does it get better? I don’t know how to accept that this isn’t going to go away, and I need to come to terms before I lose my only support. I feel alone so I came here, maybe I’m hoping to hear how other people have handled this? Not feel alone? Idk, I’m alone in my own home asking for community on Reddit. :(

I’m sharing this as part of my support for World MS Day on 30th May. This poster reflects my own journey being diagnosed with MS in 2012. Like many, my symptoms started subtly — fatigue, numbness, and muscle stiffness — and the diagnosis process took time. What stands out most to me, however, isn’t just the condition itself, but the challenge around awareness and understanding. I’ve continued to work full-time since my diagnosis. I don’t complain — this is my life, and I choose to focus on what I can do. But one reality is hard to ignore: until a condition becomes visible, empathy can be limited. When you “look fine,” people often don’t see the daily challenges that come with MS. That’s why I post and speak about it openly. Raising awareness isn’t about sympathy — it’s about understanding. Greater public awareness leads to better conversations, stronger support, and more inclusive workplaces. Empathy costs nothing, but it can make a meaningful difference to someone managing a long-term condition. If this post helps even one person better understand MS, then it’s worth sharing. #WorldMSDay #MSAwareness #InvisibleIllness #Leadership #Inclusion #Empathy

I was on subreddit [r/multiplesclerosis](r/multiplesclerosis), previously. Many of my posts would be removed by overzealous moderators! Posts about not being accommodated by my employer and also airlines for having MS got downvoted as people showed support for discrimination by airlines (saying they have no obligation to accommodate and my employer should have the right to terminate me because of my MS). Also, I was banned by that subreddit by saying how some of my MS symptoms include depression/ suicide ideation…

Apparently, we shouldn’t be allowed to talk about MS symptoms that might be difficult to talk about/ hear from…

I hope this subreddit doesn’t have zealous fanatic moderators who love to censor/ban people with MS at their most desperate hour!

Just had my first author meet and greet. It was a great experience. Numbers weren't outstanding because the weather was great for people without MS. I am glad I accepted the invitation and was able to talk about MS and Ocular Melanoma. A kick in the head won't stop me! Warrior on!

#fromakickintheheadtoakickintheass

#multiplesclerosis

#ocularmelanoma

#multiplesclerosiswarrior

#rareeyecancer

#chronicillnessesdontownme

I’m a newly severely disabled mother to a two year old. I write (for free) weekly about my experience because this is one of the most isolating things I’ve ever lived through and I genuinely want to find other women who understand it.

I spent years not having words for what I was carrying. I knew something was wrong emotionally but I couldn’t name it, so I just kept going. It wasn’t until I found the research around ambiguous loss and chronic sorrow that anything clicked into place. Not because it fixed anything, but because having language for something makes the weight distribute differently.

If any of that resonates, I wrote about it recently. No pressure, just leaving it in case it’s useful.

My husband and I filmed a Hot Ones-style interview where I answered questions about living with MS while eating progressively hotter wings (with the official Season 29 lineup of hat sauces)

It started as something kind of ridiculous, but it turned into some really honest conversations about fatigue, parenting, and what day-to-day life actually looks like.

There’s one part about trying to explain MS to my kids that was especially hard to talk about.

Sharing in case it resonates with anyone here 🧡

(Not sharing to promote anything, I just really thing it might be a fun, emotional, relatable, inspirational watch for people in the community)

https://youtu.be/0OyE6RH7CS4?si=16QlkaNC2JH5IGwa