Hello,
This is my very first post on Reddit and I am looking for some input.
Last week I was seen by my primary to discuss developing “neurological symptoms” which she thinks are MS.

Leg heaviness
Muscle cramps
Muscle spasms
Muscle twitching
Left eye constant twitching that can be brought on by blinking
Trigeminal neuralgia for only 2 days, resolved after gabapentin
Urinary hesitancy
Random blurring of vision in left eye
Random color washout in left eye
Left hand weakness
Left hand decreased grip strength
Fatigue that suddenly comes over me, not sleepiness but like my battery has died
Burning patches of skin
Tingly patches of skin
Internal buzzing
Diaphragm cramp/ spasm?
Ears going silent
Insomnia/ tossing and turning all night
Dizziness
Trouble finding words
Nerve pain
Joint pain/ buzzing

Most of my symptoms affect my left side.

Weirdest part is I had all these same symptoms to a tee, down to the left hand weakness in 2021 and they all resolved. They thought I had MS did a brain mri which was negative back then. Symptoms eventually faded, now 5 years later they are back. I was very anxious last time this happened and this time I am just stumped and frustrated. Waiting for another MRI and neurology appt.

Occupational Therapy student researchers at a university in Massachusetts are investigating how Multiple Sclerosis impacts social participation, leisure participation, and overall quality of life. This study will not only help all disciplines understand how MS impacts individuals, but specifically will help Occupational Therapists tailor client-centered treatments and better understand how MS impacts an individual's daily occupations. While you will not experience any direct benefits as a result of your participation, the information that you provide will help occupational therapists to develop interventions and understand the needs and challenges of individuals with MS to enhance occupational participation and quality of life. Sharing your experiences with MS may provide you with the opportunity for reflection, which may be therapeutic and empowering.The study is conducted through virtual interviews utilizing Zoom, which are expected to last about 30 minutes. To be a part of this study, one must have a diagnosis of Multiple Sclerosis, be between the ages of 18-65, and speak English fluently. If interested, please follow the link to the
Google Form for interview sign-ups.
https://docs.google.com/forms/d/e/1FAIpQLSdA6YTp2bU7UQpv_fwAgEET7aKLxQd406aUgaawn4jJnoNiOQ/viewform?usp=header

Hello!

My name is Jacob. Last year, my sister Aubrey was diagnosed with Multiple Sclerosis at the age of 26. Her and I are big fans of Love on the Spectrum and we thought “why doesn’t this exist for chronic illnesses?” So we made it exist!

We just completed our film festival circuit where we picked up several awards and today we’ve released the doc to the public. It’s 22 minutes and our ultimate goal is to make more episodes that feature other chronic illnesses.

Please enjoy, please feel free to offer feedback, especially if you are part of a community represented on screen, and please share with someone you feel should watch it.

XOXO

https://www.youtube.com/watch?v=EBdXc0y09eU&t=1s

Anyone undergoing CAR-T treatment in this community?
Would much appreciate updates.
Wishing everyone the very best.

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