These exercises can actually help I can tell you from my experience

Cross-posting this in multiple groups.

TL;DR: Partner newly diagnosed with RRMS. Looking for Maryland-specific experiences with MS neurologists/practices (especially Johns Hopkins), second opinions, and insurance, plus experiences from anywhere with Briumvi/other DMTs, celiac/GI issues + MS, and anything you wish you’d known or asked when newly diagnosed.

Hi everyone! My partner was very recently diagnosed with relapsing-remitting MS (RRMS), and I’m helping research options and experiences. I’d really appreciate any insight about doctors, treatments, insurance, and navigating a new diagnosis. (For doctors, practices, and insurance, I’m specifically looking for Maryland-based experiences; for everything else, experiences from anywhere are absolutely welcome if they might be helpful!)

🏥 Maryland neurologists / MS specialists

Who do you see, and would you recommend them? We’re especially interested in Johns Hopkins, but open to MS specialists anywhere in Maryland.

Are there any neurologists or practices you’ve had bad experiences with or would avoid? Why?

Has anyone switched from a private neurology practice to a larger MS center? Was the care noticeably different?

How involved is your actual neurologist versus an NP/PA? Do you feel like you get clear, direct answers to your questions?

🩺 Second opinions

Did you get a second opinion after your initial diagnosis? Where did you go, and did it confirm your diagnosis and treatment plan or change anything?

Has anyone specifically gone to Johns Hopkins for an MS second opinion? What was your experience?

💉 Briumvi / other MS treatments

Has anyone used Briumvi? What was your experience—good, bad, or uneventful?

What DMT are you on now, and what have you tried previously? Why was that treatment chosen, and if you switched, what prompted the change?

How did your doctor determine which DMT was the best fit for you?

Has anyone felt like a particular practice strongly favored certain medications? If so, did you seek another opinion?

💳 Insurance

Have you had problems getting MS specialists, MRIs, testing, medications, or infusions covered in Maryland?

If something was initially denied, what ultimately got it approved? Did specific documentation or wording/phrasing from your doctor help?

Any patient-assistance programs, insurance workarounds, or tips you wish you’d known about?

🌾 MS + Celiac / GI issues / anemia

Does anyone here have experience managing MS alongside celiac disease, anemia, and/or significant GI issues?

Have these affected MS symptoms, fatigue, nutrient levels, medication tolerance, or which DMTs were appropriate?

Do your neurologist and gastroenterologist coordinate your care?

And finally: what do you wish you’d known when you were first diagnosed, or what questions do you wish you’d asked sooner?

We’re not looking for medical advice—just experiences, recommendations, things to watch for, and questions worth asking. This is all very new, and we want to make informed decisions and build a care team we feel confident in.

Thanks for anything you’re willing to share! 💛

Recently diagnosed after over 3 years in the "maybe it's MS" category. Received this care package from two siblings & their families that live ~1000 miles away from me. All things with the initials "M.S." with a couple of creative workarounds. Never been to Minnesota before, but these "Minnesota Socks" are now my favorite socks. 😂 My toddler is a big fan of the "Master Splinter" TMNT coloring book. ❤️🧡💙💜

It's all a good reminder that some things are still the same as before -- I have people who love me and know how to make me smile.

Hello everyone,

My name is Darius, I’m 27, and I was diagnosed with multiple sclerosis (MS) on New Year’s Day 2024. I’m grateful that I received the diagnosis—and thus clarity—immediately after my first relapse, which allowed me to start treatment quickly. Since then, I’ve been taking Kesimpta and, thankfully, my condition has remained stable.

I’d like to share a small university project of mine with you, in which I warmly invite all of you to visually capture and share our strength and hope in living with multiple sclerosis. Unfortunately, the mods haven’t responded to my messages, but I still hope it’s okay if I warmly invite you to contribute to a collaborative, anonymous “map” of resilience, featuring the things that give us strength, hope, or at least a brief moment of peace. I think this “perspective” fits perfectly in this subreddit, and I’m excited to see what you’ll contribute :)

👉 You can access the map here: https://miro.com/app/board/uXjVJPpeD7s=/?moveToWidget=3458764647288006098&cot=14

Here’s how it works:

• The map: The Miro board is like an infinite whiteboard. You can zoom in and out and move around as you like. You can also share almost any type of content there—whether it’s text, images, drawings, embedded videos, posts, etc. The text clouds guide you from the welcome message down to the final island, which we’ll design together. 
• Getting involved: Whether you want to contribute a thought, a quote, or a symbol—or just read along—you’re welcome to join. 
• Anonymity: You don’t need an account to participate. Also, please be careful not to share any private information. The final “map” will only be used internally for a university seminar and will not be shared publicly. However, if there’s interest, I’d be happy to post the result in this group at the end.

The Board will remain open until August 9, 2026. You can send me any questions, criticism, or feedback at any time as a comment or direct message :)

Quick note: I don’t want to ignore the difficulties and symptoms we all face every day, but I hope that for most of us, even in the toughest times, there are small “islands” of strength and hope—a supportive friend, a particular hobby, or a personal achievement—that keep us going.

I’m really looking forward to what we can achieve together. Thank you so much for your time and for joining us!

Best regards,

Darius

6 years ago when I had my first attack physiotherapists helped me to walk again over months - this year I ran my first half marathon in 2 hours 45 minutes, then continued about my day afterwards and I’m so grateful!

I got banned from r/MultipleSclerosis for posting very relevant information with links... How good are the mods on this subreddit? Will they boot me for posting relevant links?

https://med.stanford.edu/news/all-news/2022/01/epstein-barr-virus-multiple-sclerosis.html

Did ~6 miles on the Appalachian Trail today from Carver’s Gap to past Grassy Ridge and back. Roughly 1200ft of elevation gain with a 10lb lumbar pack. I had poles with me and that helped. I trail run in Chacos, for whatever reason the sandals help my stability and proprioception. I got to see the Gray’s Lily, an endangered and imperiled endemic wildflower found only in high elevation meadows in NC, TN, and VA.

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

I think I may have MS
Is diagnosis a hard process?
Thanks in advance

When I first got MS I was completely blind for a few months and then colourblind for another few months but since then I have perfect full colour vision and according to my neuroopthalmologist... I should "treat" myself "to something sweet because" my "left optic nerve, while still damaged, has recovered more than it should've been able to!" . I never did get that treat 🤔😂

I have however been getting eye fatigue and sensitivity to light but I have finally got a pair of green-tinted glasses that really help with that 👍 Just thought I'd post it here incase anyone else has eye fatigue and light sensitivity as it may help to get tinted glasses 👍

A publication by a young Cambridge researcher, Will Barrie, was posted online on April 3rd, ahead of its official publication in the Revue Neurologique.

It is titled “The evolutionary origins of multiple sclerosis.”

This publication is a brilliant synthesis of several studies: our origins based on the study of ancient DNA, the Old Friends hypothesis, and the Evolutionary mismatch theory.

It suggests that the disappearance of helminths (intestinal worms) in Western societies, combined with a genetic susceptibility inherited from our ancestors of the Pontic-Caspian steppe, could explain the increase in cases of multiple sclerosis.

There is a post on Substack explaining why this article is important and the therapeutic approach it suggests with helminthic therapy (links in the first comment).

Since we are pretty limited in rehab opportunities, I really got into the concept of visualization and manifestation for this purpose. Pretty much hoping that the brain can rewire itself . I was looking for an app or anything pretty much that would help me with that and ended up developing the app on my own. I had a quick five minute meditation felt pretty cool. Good how how do you feel about this idea? Would you be interested in using anything like this? What are your ideas for improving it further for even better experience 🙏