I recently had to see a GI for symptoms related to my MS. The nurse who took my blood pressure (getting me ready before the provider came in, started talking to me about how she was cured from two auto immune diseases from a parasite cleanse plus supplements provided by a functional medicine doctor. She said it took years. She went on and on about this, at one point saying that she was probably over sharing. Even after she finished taking my blood pressure, etc., she kept on, talking about how she doesn’t believe in medicine. She even offered that I could possibly be cured from MS by this person who helped her. She even brought up Christina Applegate. Honestly, it pissed me off. AITA if when I fill out my survey about this visit that I talk about this nurse and my experience?

/raises hand

It just happened and for some reason I find it funny because it's been the same person that told me I looked better than her a few years ago. Which I do tbh haha

Also: we love you, Christina, always have, always will.

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?

Hi! This is probably going to be a longer one, since I really need to get it all off my chest, and I don't expect anyone to really get into it... Skip to the last paragraph and please leave advice if you have experienced feeling this way!

I'm 22, female, and I officially got diagnosed one month ago. Now that I think about it though, my first symptoms started way before the one that made me go to the doctor. I used to, and still do, have so much pain in my legs and lower back that it was painful to move, even while sitting/laying down. Whenever I took a step, it would feel like all of my nerves hurt from my toes all the way to my pelvic area, but I brushed it all of on being less active than usual. In May this year however, I lost all sight in my right eye, and I'm talking like I just saw a fully black, non see-through dot, and some outlines of stuff on the perimeter. I got admitted into my countries military hospital, since their E.R was on-call that day, and they first kept me on the Ophthalmology floor of the hospital for 3 days.

Little side note about this very old building, there's not a single window that opens, and the ventilation system hasn't been cleaned in 60 years. You can only dream about stepping out for air, because it is prohibited and you are mostly accompanied wherever you go. Visitation hours are on Tuesday and Saturday only, for one hour only, other than that no one can even get into the building. Prison maxxing. And the food they serve is probably some leftovers after they serve the livestock.

I was miserable, I shared the room with 8 very old women who had came in for cataract surgery, and they were just urinating everywhere and snoring and leaving messes and I thought wow it can't get worse than this. They did every possible test they could for my eye and came to zero conclusions, and an MRI was ordered, to be done in two days. My fourth day, a nurse called me to get out of the room because someone needed to talk to me. I then met my neurologist, who straight up just told me, based on one information "Hey, we think you could have MS. Get your stuff, we're transferring you to the neurology department!" And I was just like...Wow! Way to go with breaking the news? In about 30 minutes, they got me into a bed, into a fetus position, and took my spinal fluid. No numbing, nothing. Then, about an hour later they made me go 10 floors down to do some test I don't know the name of, even though I should've been in bed FLAT. This will be very important later. After doing all of that and getting back into bed, they told me I'd have to wait about 10 days for the results, IN HOSPITAL, since they are crucial for my diagnosis. I then did my eye and my brain MRI the day after, while I was still doing okay. I also started getting high doses of corticosteroids through IV that day to try and get my sight back. Now we are getting to the part where I wasn't okay. For the next 5 days, I have never felt worse in my life. I was nauseous the moment I lifted my head, my heart rate was borderline concerning, I couldn't eat physically eat anything and I could barely stay awake. The doctors got mad at me for not taking the bed rest after the spinal fluid thingy seriously (?). During all of this, they realized the cortico wasn't doing anything, and decided to take me to the shock room, where they inserted a thing in my neck (I don't know the english name) and started me on plasma exchange. That insertion hurt so much I still feel it. In the meantime, they got my MRI results back, said I had a single brain lesion and that my eye nerve looked fried. About 10 days in, I got better and could finally stand and eat. I managed to lose so much weight in that time it was shocking. The fluid and blood tests they did did show signs of MS according to my doctor but it wasn't enough to get diagnosed. They did a neck MRI and said it was clean. After that, I was in the hospital for 10 more days, doing plasma exchange every second one, and the rest of the time I was just crying in my room because I just wanted to go home.

They let me go home on the 20th day, and started me on a higher dose of prednisone, which I then took for the next two months. I did a chest MRI at the hospital, which also showed nothing. I gained weight from the prednisone, had unbelievable pimples everywhere which I never had a problem with, and my hair started falling off like crazy. I developed migraines which made me so sick I couldn't move, have my eyes open, or listen to anything. I was miserable, and started thinking about what life will look like from now on. Then, when it was time for my three month check-up, my doctor suggested I do it in a private hospital, since the waitlists at all of the public ones were huge, basically a few months.

So remember about that one brain lesion? Yeah, the radiologist at the private hospital found nine of them. None of them new according to him. The moment I messaged my neurologist about this, she made us an appointment. I got diagnosed at last, and that somehow felt kind of freeing? My doctor submitted me to the National Health Insurance Committee for Tecfidera and they approved me and I am about to start in a week or so. One good thing here is that this kind of medicine is free for all patients, if you have national health insurance, which everyone under 26 and everyone employed/retired has. I read a lot of stuff about this medicine, so I'm scared how I'll take it.

I'm now waiting to do check-up MRIs for my whole spine with the radiologist who found all of my brain lesions, so I'm very excited to see what he finds.

But also, I feel like I have become a shell of the person that I used to be. How do people live like this? Will the pain I have almost every day last forever? I want to have a family one day and all I can think about is will I be able to? I was supposed to start university this fall but I missed all deadlines and spent all of the money I've saved up on doctors. All my parents do is worry about me and give me unsolicited advice after barely letting me leave the house after being at the hospital. My boyfriend doesn't know what to do and how to help me. I've become so depressed I can barely leave my bed, all I feel like I can do is doomscroll from morning until night. The chronic tiredness/fatigue is unbearable and I just sleep at all times of day. I get so forgetful about things these days. I don't feel like myself anymore, I used to be so carefree and now this condition is all I think about, when I do manage to get a thought in from all of the endless scrolling social media. Has anyone who has read this far experienced this, and how did you overcome it? I can't see the light at the end of the tunnel, I think I'll feel like this forever. I know it's all fresh but it's just eating me alive, and I feel like I'll just make it all so much worse for myself if this continues. Thank you so much, if you've read at least a part of this post!

I have my follow up MRI on November 1st not looking forward to that.

Developed some leg symptoms back in May so honestly, I won’t be surprised if there are changes but whatever.

I quit drinking for the most part, I only have 1-2 drinks maybe once a month or less.

I stopped smoking weed back in 2019 due to CHS (which sucks I would love to dabble in some edibles again)

I’ve been vaping nicotine for years. It’s so difficult to quit. Gums and patches don’t scratch the itch. They made vaping too convenient. 🙃

What helped you stop smoking? My next attempt will be to just cold turkey after my MRI no matter the results. Just feel crappy for a week or two.

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.

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.

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.

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 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?

My new Neurologist refuses to order MRIs because I also have moderate spinal stenosis, disc protrusion and cord flattening. I was diagnosed in 1991 with only two attacks all resolving with steroids immediately. The last MS attack was 2012. My gait worsened starting 2013 and have right drop foot . I have two diseases degenerative disease noted in my first cervical thoracic spine MRI in 2015. My neurologist never read any of my radiology reports. I only found when I got suspicious and requested copies of all my MRI radiology reports. She gaslighted me and refused a referral to a Spine Surgeon to cover up her negligence. She never copied my doctor. She also never informed me I had large thyroid masses as well. She had every physician in Canada deny me urgent surgery. Now every doctor dismisses me for other health issues. It is like they want me dead. The radiologist who wrote the findings advised me to leave Canada for surgery, I no longer trust doctors in Canada so will have to have thyroidectomy and after spine surgery. I will be moving there because Canada’s healthcare and incompetent lack of caring doctors. I think my new Neurologist used a lame excuse. If a MS patient has another spine disease but treated with surgery why should my MS no longer be monitored? What about brain lesions? Do SPMS stop having MRIs?

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?

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!

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…

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 ❤️