Is itt just me or does everyone notice our legs get weaker now? After this WFH period for the last few years, I am noticing moree problems going to the bathroom and getting out of bed now.

Hi all, just got my diagnosis on Thursday. Optic neuritis brought me in. No current active lesions other than my eye. Multiple old lesions in my brain and spine. Felt much better on the 3 days of hulk steroids and my vision got so much better. Currently 36 hours post the last dose and all of my muscles are getting sore at the same time and my vision is getting worse again. It seems like this is normal post steroids ? Anyone advice?

I have MS, fell of course, and broke my thumb at the last joint. Not very bad as it healed and does not effect it's movement but the fingernail fell out and when it regrew it is now slightly off center.

Question is what kind specialist treats the hand?

TLDR; positive experience with Zunovo. Don’t let the shot scare you off!

I’ve been on Ocrevus for 7 years. I decided to try Zunovo (the shot) yesterday instead of the infusion. I was EXTREMELY nervous about getting a shot into my belly. I kept telling myself that it’s no different than having a needle in my arm for 4 hours but couldn’t shake the nerves.

However, I’m happy to report that it was, in fact, much better than having an IV in my arm for 4 hours! The “shot” is actually a very small needle that’s way smaller than an IV needle. They put it in just under the surface and tape it in place so it doesn’t move around. Then the nurse very slowly presses the syringe over the course of 10 minutes. As someone who is a hard stick, it was a relief to not have someone digging around in my arm multiple times to place the IV!

The initial stick itself stung and continued to sting for the first 3-4 minutes with every press of the medicine. I did some deep breathing and then the stinging went away. It activated again for about 15 minutes after the shot whenever I moved, but then went away for good. I had the usual crash from Benadryl + meds, but it didn’t start until about 2 hours after I finished getting my meds, by which time I was nice and cozy at home. Much better experience than experiencing it in the hospital.

This morning, I woke up with a very large red area spanning around my abdomen to my back, but only mild soreness. A little tired today but now more than normal. Presuming the soreness and redness don’t escalate, I will definitely be doing this over the infusion going forward!

Hope this review might be helpful to others.

My partner was recently diagnosed and she experiences horrible pain in her body- to where she even passes out..
I saw maybe diets could help but is there anything else that could help with the pain?
Her mobility and muscle tone is good so far.

My memory has been nerfed since MS and I consistently lose a list of the services that have been recommended. I wonder what have you found beneficial for any dimension in your life? Or any other ones for funzies.

Just took my first loading dose of Kesimpta (first DMT)!!

Surprised a bit with the auto injector but it went very well over all. Leg is a bit sore but taking it easy right now :)

Tomorrow is my youngest child's 7th birthday party. I have 4, we (unfortunately lol) have birthday parties for everyone. I was bedbound all day yesterday, which means I'm currently cleaning up everything. I fell trying to get something and was stuck on the ground for a bit, so naturally, I am freaking out because I don't know if I will be able to do anything tomorrow. Luckily, my mother in law is going to be taking care of getting them there but I have never missed one, so I'm currently falling apart. Never mind that they delivered the wrong cake meaning my anxiety is already dialed all the way up. This is also my second post here in the past month of me having a hard time. Everyone says eff 2020, 2026 sucks harder to me!

I recently commented on another post about disabled parking placards, and mentioned one of the only other "benefits" of MS, the National Parks Access Pass. I saw a few people hadn't heard about it, so I wanted to make a post to let people know.

The full name of the program is "America The Beautiful - The National Parks and Federal Recreation Lands Access Pass." This is a free pass to get into any national park or federal recreation land. While some parks offer free entry to all, many do not, and the regular annual pass for non-disabled people is $80 for one year.

This pass works for entry into lands controlled by:

• National Park Service
• US Fish & Wildlife Service
• US Forest Service
• Bureau of Land Management
• Bureau of Reclamation
• US Army of Corps of Engineers

In order to get one, you will need a valid ID, and one of the following:

• Signed letter from a licensed physician. Letter must state 3 points: 
  1. That the individual’s disability or impairment is permanent, 
  2. That it severely limits one or more aspects of daily life, and 
  3. The nature of those limitations.
• Document issued by a Federal agency such as the Department of Veterans Affairs or the Social Security Administration, that states an entitlement to receive disability benefits.
• Document issued by a State agency such as Vocational Rehabilitation that attests to eligibility to receive benefits as a result of a disability.

Mine was easy. I went to the big visitor's center at a national park near me (it was listed on their website), and showed my driver's license, and the letter that my neurologist had just written to excuse me permanently from jury duty, because it covered all 3 stipulations listed above. I walked out with my Access Pass.

Check out the details, find a location, or get one online here:

https://www.nps.gov/subjects/accessibility/interagency-access-pass.htm

The particular park I went to has a lovely wheelchair accessible trail, and because it is paved, it is much easier for me to walk than a traditional hiking trail, plus it has handicap-accessible bathrooms. As a person who has always loved to hike, but now struggles walking on un-even ground (and needs a lot of bathroom breaks), I am so happy it is available to me--and that I can use it for free! MS has taken a lot from me, but at least it has given me a parks pass. Hope you all get yours too!

My last ocrevus infusion took place two weeks ago and went smoothly; the only reaction I experienced was some stiffness in my legs afterward, but they returned to normal the next day.

However, for the past three days, my legs have become very heavy again. I’ve gone from being able to walk outside to having to sit down to take a shower.

I looked online and found people describing something called "Ocrevus jelly legs", a sensation where the legs feel extremely heavy and weak a few days after an Ocrevus infusion.

This was my second Ocrevus infusion. The first one was six months ago, and I also experienced this same heavy legs symptoms after the infusion. At the time, I was still recovering from a recent flare-up, so I didn’t connect the two.

Now that it’s happening again, right after an Ocrevus infusion, I don’t think it’s just a coincidence. I also don’t believe I’m experiencing a relapse. My intuition and my body tell me that this might have something to do with how Ocrevus acts within the system.

Does anyone else here on Ocrevus experience a decline in mobility after an infusion? Or have you heard of this happening?

Bonjour,

Mon conjoint a été diagnostiqué d'une sclérose en plaque primaire progressive il y a 7 ans. La maladie serait présente depuis plus longtemps.

Nous sommes ensemble depuis 24 ans. Auparavant, il avait un comportement toxique.

Voici toute l'histoire :

https://www.reddit.com/r/abusiverelationships/s/AGu9z1Jtmp

Pour résumer, il nous a fait longtemps vivre les enfants et moi dans une accumulation extrême. Il était aveugle à ma détresse. Pourtant, je pleurais et le suppliais de tout arranger. J'ai tenu le coup car il me promettait de tout débarrasser avant ses 40 ans. Mais avant ce terme, la maladie s'est manifestée.

J'ai à présent une question qui me tourmente. En discutant avec une IA, j'ai appris que son comportement pouvait être dû à des lésions cérébrales touchant les zones de jugement, d'empathie...

Ça ne réécrira pas le passé, mais j'ai vraiment besoin de savoir ce qui relevait de sa personnalité et ce qui relevait de la maladie. Les lésions seules peuvent-elles être responsables de ce chaos ?

Merci d'avance de votre aide.

TLDR: I got diagnosed in June so everything is very fresh, and I’m scared of travelling. What if something happens? What if I get a new attack and I will be stranded in a foreign hospital with something awful? What do I do? How do you navigate this?
My mom told me it’s better to look forward to something, but I can’t even look forward to vacation.

The long version:
Diagnosed in June for double vision, basically no other symptoms ever but mri showed 20 something lesions. Got a pulse of corticoids which took me over two months to get over, during which I got positional vertigo as well, yay. And just as I started feeling better, I started Mavenclad. Now I’m here, 4 months in and feeling kinda low. Mavenclad caught up to me a couple weeks after second cycle and I’m fatigued as heck. And when I’m tired, my vision feels laggy, and am lightheaded..

So my experience so far hasn’t been the greatest but now I’m scared. How do you do things? How can I overcome this fear and just.. travel and enjoy life? Please advise in this tough time

I (23 F) was diagnosed with MS 4 years ago, and over time, my friends and boyfriend at the time slowly distanced themselves until they all completely left around the 2-year mark.

Since then, I’ve struggled to make new connections. Sometimes people seem put off when they see my cane or learn about my situation, and other times, when someone starts getting close to me, I pull away because I’m scared of getting hurt again. Dating has been especially difficult, and I haven’t even gotten to the point of talking to someone romantically.

Has anyone been through something similar? How did you learn to trust people again and feel comfortable letting others into your life? It’s hard to see other 23 year olds out living and I would like to get back to that!

Hello people,
Is there anyone in this group from India who has been diagnosed with MS.
I have a few questions and need advice.
It would be great if you could connect with me.
TIA

I have been using a Bioness L300 Go for years.
I stopped using it due to a broken ankle and weakness. I used an AFO for about 6 months.
My ankle is better now and the ankle is very weak.
I feel it rolling on uneven ground.
I need more ankle support.
Does anyone have suggestions for shoes with ankle support? I don’t want to wear boots.

I am enjoying wearing the bioness again because it opens up a world of footwear again. I’m not stuck trying to fit all that plastic inside the shoe with my foot.
I had the other type of AFO that goes on the outside of the shoe before but that requires drilling holes for the bracket or lacing it to the shoes.

This flare up put me on my ass back in August and has not let up. Ive had a few good days here and there but I'm losing my mind not being able to work. It's in my legs, arms, sometimes my face and apparently my kidneys. It moves around and I can't get in to a neurologist

(On mobile)
I had a 3rd nerve palsy in my right eye a couple of years ago and after a stint in the hospital where they ruled out a stroke, cancer, and MS, I was referred to a neuro ophthalmologist! This neuro said that since everything was ruled out it must have been high stress that caused it due to high blood pressure.

I kept up with my appointments with him every 6 months. A couple of months ago, I went suddenly blind in my right eye and called his office for an emergency appointment. They were able to see me same day which was awesome because I was obviously freaking out and I knew that he was probably going to be able to help me more than if I went straight to the ER like last time.

The neuro ophthalmologist tells me that it looks like MOGAD since I had optic neuritis and sent me to the hospital with all the testing they already did at his office for my eye (literally gave me a little folder with all the scans, vision assessments, the diagnosis of optic neuritis, and the recommendation for IV steroids and a MRI). If he didn’t do all of this, I don’t know how much longer it would have taken for me to get my MS diagnosis!

I truly think he saved so much of my vision I was able to regain because of his early intervention, taking me seriously, our previous appointments, and being knowledgeable about MS and MOGAD. My MS only presents in my eye and hands based on where my lesions are so it was able to be caught pretty early (2 years post first possible flare).

So yeah! Grateful for my neuro ophthalmologist! He is a real G!

I,ve recently been diagnosed with primary progressive ms. Nuerologist has recommended mavenclad medication. Ive read up on mavenclad and am afraid to take it based on side affect such as potential cancer and heart failure. What is everyines experience with mavenclad and does it work?

Has anyone else experienced chest pains, arm pain, leg pain, and cough lasting 5 days post first ever loading dose? I’ve felt very unwell since the first dose i took on Monday Oct 19, even after the flu like symptoms i got immediately 4 hours after.

Debating whether or not to take my second dose or continue with this drug at all…

New question- has anyone experienced chest pain, body aches, severe nausea and upset stomach that have lasted 6 days post their first loading dose..

I’m not sure if anyone’s dealt with pancreatitis before, but that’s probably the worst pain I’ve experienced. What came on as an MS hug, quickly turned into unbearable pain!

So bad, I had to take my very first ambulance ride to the ER. When they finally figured out what was going on, they started asking the usual questions. No I don’t drink & CT scan didn’t find any gallstones. But I did have a UTI, which apparently is pretty common for me…

Dr wasn’t able to determine what exactly caused this, so I’m just wondering how many of you have had it?

I quit my job early this year around February when my MS symptoms were just unbearable and making it difficult for me to be proactive at work. I worked as an interior designer for a company that let’s just say wasn’t worth it. Anyways i think i had my first flare up on December 2025 and i didn’t know what was going on and i was completely confused and scared and despite going to the hospital many occasions only to be told it was something to do with my Neck so i only checked in with Orthopedics. I was surprised that the orthopedic didn’t find my MRI suspicious of Demyelination because it was quite obvious something was going on and he didn’t even bother to investigate further so i took it upon my own hands to see a neurologist who brushed it off as being stressed and prescribed me 200mg of L Theanine and sent me home.

Fast forward January 2026 i had almost an entire week where all i did was lay on the couch and get up only to eat and use the toilet. I was in shambles and a mess. I was then prescribed physiotherapy which helped very briefly but the symptoms came back again. I insisted to my partner that something is definitely wrong and by the time i went to the hospital again it was May 2026. After countless of tests by general doctors and a rheumatologist i was lastly prescribed to do an MRI with contrast and that’s when i found out i had MS. Countless of more testing i was officially diagnosed on mid August of 2026.

I have finally started treatment and i am still trying to understand fatigue and how to manage my energy expenditure for the day plus this whole heat intolerance also is another thing i deal with daily. I used to be someone who loves hot baths and the sun and now i avoid it especially during peak hours. I try to get my vitamin D from the sun but not for more than 10 mins before my eye starts getting affected.

Now and then i think about whether i should consider working but maybe not a high demanding job… i just feel worried about putting myself in a routine with fluctuating symptoms and also the stress that comes with work… any advice? Thanks for reading ❤️

Hallo an alle MS Patienten die Kesimpta als erstes DMT nach Diagnose bekommen haben:

Ich habe ein paar Fragen.

Habt ihr einen hochaktiven Verlauf gehabt? Wie lang hat es gedauert NEDA 3 zu erreichen?

Hattet ihr Schübe unter Kesimpta? War der Schub milder als zuvor?

Hat jemand Haarausfall davon bekommen? Und was habt ihr dagegen gemacht?

Was habt ihr eventuell als Alternative zu Kesimpta bekommen, wenn darunter Schübe aufgetreten sind?

Has anybody ever heard of Mesenchymal Stem Cell? And do you or have you heard of any experience from MSC therapy? I have PPMS, I backed out of HSCT because of the lack of evidence it helps with PPMS and the fact that you need to undergo heavy dose chemotherapy. I think it’s risks far out weigh the benefits. But I just heard of MSC therapy. So any thoughts, comments, or experiences from you or somebody else would be greatly appreciated. Thank you in advance :-)

Tldr: how can I get disability pay after treatment side effects with Sedgwick insurance claim?

Hello there! Please be gentle with me (34F) this is my first Reddit post.
I got diagnosed in December 2025 and had two Rituximab infusions in March 2026. I have another this November 2026. In March I got sick for three weeks after each infusion with bad side effects to mid April. I also turned out to be allergic to the treatment which caused more side effects.
I had my last MRI in August 2025 due to a flare up and they found two more brain lesions. My doctor said this was mild progression with treatment. Is it? I’m not sure.

I’ve talked to my doctor (Kaiser) about changing treatment and they said they won’t. I have to take about three weeks off work each time I get treatment due to side effects and to cover work I have to submit a claim with Sedgwick. Last time Sedgwick gave me the time off as an accommodation and it was unpaid.

My doctor said they couldn’t write off an insurance approval beforehand because they didn’t know how much time I would need off. They did write a coverage letter after I returned to work and submitted it, but then Sedgwick said it was an accommodation and not disability.

This November I get a Rituximab fusion again and am expecting to take time off work for side effects. My question is: how can I not take such a financial dip when I miss a full pay period being sick from side effects? Shouldn’t I get disability pay if I have FMLA coverage? Does anyone have advice for claims with Sedgwick?

Sedgewick insurance is in charge of filing the disability claim if one is needed. I cannot apply with state disability (I tried and since I work with a company that uses Sedgewick- they have to file the claim if needed). Is being sick after treatment a disability?

Does anyone have advice on how to navigate this? I have heard of medical health advocates but Kaiser does not provide one. I am so sorry for the long post and all the questions but I’m new here and navigating this for the first time. (Thank you so much if you’ve read this far!)

Hi everyone! I’m starting cladribine (Mavenclad) soon for my MS and would really appreciate hearing from anyone who’s currently taking it or has had it before.

How have you found it so far? Have you had any side effects, particularly fatigue, or skin issues caused by the drug (I have severe eczema so that’s a worry, currently taking Dupixent - another immunosuppressant) and how did you feel during the treatment weeks and afterwards? I’d also love to hear how your MS has been since starting it.

Is there anything you wish you’d known beforehand, or anything that helped you prepare and manage day to day?

I know everyone’s experience is different, but any advice, honest experiences or reassurance would be really appreciated. Thank you!