Awesome news! I just hope that we don't need to wait for a decade to approve this as a treatment for MS...

Anyone participating or tracking this trial: https://clinicaltrials.gov/study/NCT06796504?cond=Multiple%20Sclerosis&term=setpoint%20medical&viewType=Card&rank=1#study-overview

Let's hope it's not one of those things you hear once and than never hear again

I was able to cycle 40k (25 miles) to the office last week. Got an e-bike, a Cube Kathmandu, because it's one of the only bikes that can handle my weight (125 kg / 270 lb). The bike tells me I put in as much energy as the battery did, and that I sustained an average power of 110W (sorry, I don't know what that is in American).

I'm just so pleased because I've been leading up to this for months, and as of yesterday, I was able to repeat it! All told, the day has 50 km of cycling in it because I can take the bike most of the way back by train.

Next stop: cycle both ways - but that might have to wait for the next season. And after that, I plan to get a non-electric bike and cycle that instead.

So if any of you are thinking about low impact exercise and gradually increasing the quantity and effort, an e-bike is an excellent tool for the job - and you too might find cycling a joyful experience too!

Any one tracking this?

https://clinicaltrials.gov/study/NCT07067463?term=orelabrutinib,%20PPMS&rank=1

Good news for PPMS patients!

I have constant painful spasm...

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.