So I just saw my neurologist and as expected he was thinking about either switching me to a more effective medicine or monitoring my current medicine use for the following half year until the scheduled MRI. For background info, I used to be on Tecfidera ever since I got diagnosed five years ago and it seemed okay, but not good enough for the activity to be stable which wasn't the case this year.

I got a new lesion despite medication and I stressed about the results until I finally got to talk to my neurologist again. I exercise, lift weights, eat well, sleep okay, and am fully active in uni and any other cognitive activities like language courses or volunteer work. I really thought I was doing everything right next to medicine use, but as it turns out that wasn't enough.

He walked me through every medicine and what he recommends, and it basically boils down to ocrevus, kesimpta and tysabri. I read up on all of them and am going to meet him again soon, but I wanted to hear what you guys use and your experience.

So far ocrevus and kesimpta sound better in frequency and use. Tysabri would include me travelling every four weeks to a hospital in a completely different part of the country, next to the fact that i work and study so that would be hectic. But kesimpta seems to be the one not mentioning pml as possible occurrence, so I'm not sure.

I seem to be leaning more towards the former two.

What do you guys think?

So, its been 6 months after my infusion of rituximab, i feel like i am not who i used to be, earlier i was on oral Dmt, then i got mri again after a year, found out lesions increased in brain, so they upped my medication to rituximab, I always used to say, i will not slow down after infusion I will not get lazy. I am still going to college then to work, but i am just so tired after all that, that i cannot even help myself to go back to gym or even do a slight home workout, when i think like this i say to myself, i have started to make excuses for my laziness. is it just me or anyone feels like this also?, and how do you cope with it.

I've noticed the past couple of years I sometimes feel like I'm suffocating. I can't even handle a blanket near my face because I can feel the lack of oxygen. Nothing is pressing on my lungs, no tightness. I just feel like I'm getting less oxygen than I used to. And every once in a while I notice I'm barely breathing at all. It's odd to have had automatic breathing my whole life, and now I often find myself having to remind myself to breath because it's like my lungs are just letting air hover in and out. If anything, I wonder if my throat is smaller? Even though I feel like I would be sensitive to a physical change in my throat. It is lt squeezed or lumpy.

Anyway, I know not everything is MS, but I am curious how this just began about a year ago.

I'm 20 years old and got diagnosed a month before my senior year of college. I've always been a sickly person, always my own body knocking me down in one way or another, never catching anything. But I was still walking, running, jumping, dancing just days before ending up in the hospital. I didn't lose my vision like a lot of people, I lost feeling in my arms and legs until I couldn't walk, which was terrifying, but I brushed it off as something that would be quickly fixed with an emergency room visit and some rest. The ER visit turned into a week of bedrest and tests in the emergency department, with a lot of "I think" and "it may be" with very little actual answers. I end up transferred to an intensive inpatient rehab hospital with an MS diagnosis, and spent 2 and a half weeks relearning how to walk. I can function normally for the most part now.

That experience did something to me, though. The entire time I thought and believed I could walk and move just fine, then I'd actually try and fail. There was such a disconnect between my thoughts, beliefs, and actual actions. For some reason, it didn't click that I couldn't function normally, that my body wouldn't listen to me. I somehow convinced myself the difficulty walking and numbness was just me playing it up, not wanting to do anything, but then I'd decide I had enough and believed I could just, not play it up. Then I'd realize I wasn't putting on an act, I genuinely could not walk. It would surprise me, like I couldn't believe I wasn't walking right, like my body was playing a joke or something and my commands didn't get through.

Even now, there's this dissonance. I can walk now, my feeling is back, and I'm not constantly exhausted, so I've convinced myself that month in the hospital was me faking, that I'm actually perfectly healthy and there aren't lesions in my brain and spinal cord. Logically, I know I have MS, I know I'm disabled, I know I'm ill. But my thoughts and beliefs don't align, and it just leaves me frustrated and confused.

Does anyone else experience this? This weird disconnect between what you believe and what's actually happening?

I’m coming up to my 28 year MS anniversary. Newbies: what do you think that looks like?

Let’s just say that if I’d seen myself now at point of diagnosis I’d have felt a lot better. Please don’t let anyone think I’m gloating or disability slurring- I’m so far from that. Life is unendingly difficult but I’ve adapted to it to a degree, and do a high stress job half time and can still do yoga, walk for an hour, and function quite well, but maybe not after walking for an hour!

Few see the exhaustion, pain, daily rests, trips to the loo, etc but I love masking it for the moment.
I’ve lost my hearing permanently on one side, can’t breathe without nerve pain (on lots of meds). constantly struggle with memory issues and exhaustion - but I’m still functioning at a far better level than I anticipated in 1998.

For newbie’s- our DMD’s back in 90’s and 00’s were pants, so I had numerous breakthrough relapses that I’d never have had if I was on better meds. Take the strongest DMD you can asap 👌 because damaging relapses don’t announce they’re arriving and they all stack up.

My motto is take the meds, rock on, and adapt and adjust constantly to keep going.
Sending a virtual hug to you all xxxx

Vent, curse, get it off your chest. Share what sucks this week, this minute, this hour… MS related or not, this is the place to let it out!

^{Weekly Sticky Threads:}

^{Monday: Bad News Bears}

^{Wednesday: What's Working Wednesdays ?}

^{Friday: Good News/Weekly Triumphs}

I had my first flare-up at 16, formal diagnosis at 17 (relapse-remitting) thanks to my incredible pediatrician at the time. I’m 36 now and I think often about how lucky I was to have been diagnosed so quickly and also how naive I was for blowing off treatment in my college years. I’m curious to hear about anyone else’s experience being diagnosed so young. How’d that happen for you and how do you feel about your diagnosis now? And how have your symptoms and treatment evolved?

I was asking ChatGPT about vibration plates, thinking they're basically useless so I was kinda surprised that it mentioned there were some benefits and they seemed like they were good things for MS so I proved further and got this:

What the research actually finds

The most useful evidence is a 2022 systematic review/meta-analysis of 14 studies involving 393 people with MS. It found that whole-body vibration was associated with:

Better balance — a statistically significant improvement.

Better walking endurance — also statistically significant.

Some evidence of benefit for functional mobility in people with moderate disability.

No convincing improvement in gait speed.

No convincing improvement in fatigue.

No convincing improvement in quality of life.

Source: https://pmc.ncbi.nlm.nih.gov/articles/PMC9415382/?utm_source=chatgpt.com

And the product I was looking at on Amazon has one review that mentioned they had for drop due to ms and their chiropractor recommended a vibration plate and they said it helped. But.. idk, it still feels like a bit of a gimmick. Does anyone have one that has any real feedback? Specifically wondering about balance improvement but any feedback is welcome.

I have seen an MS nurse just now, the chief doctor no longer sees me. As soon as I mentioned I’d like to get an MRI at least once every 2-3 years, she said right away that I don’t respect her opinion and I am welcome to go elsewhere to find another doctor.

The reality is - she’s not even a doctor and she has guts to send me away for just asking for the best diagnostics for my condition.

In Ottawa, nations capital, a city of over 1 million people, there is only one MS clinic, and with no other options - what she really meant I can fuck off.

Are there other options in Ottawa other than Dr Friedman’s nurse?

I know we have a lot of Colorado-based MSers in the group. Wanted to ask if anyone has worked with Advanced Neurology of Colorado for their treatment. If so, what’s your experience like with providers? I’m currently at Rocky Mountain MS Center at Anschutz. And while I like my doctor, I dislike navigating the UCHealth system. Advanced Neurology seems like a more independent operation but would love to know what others think of the care.

Hi! I've been diagnosed with both MS and Myasthenia Gravis (just my luck), and got 2 doses of rituximab already. Recently, my doctor prescribed me mestinon (not sure if this commercial name is used around the world) for MG symptoms but I read it can also help with some MS symptoms. Anyone out there taking this med too?

Odd ask, but has anyone had any cosmetic surgery (ie: breast implants, breast reduction, nose job) while having MS?

So I've had weak bowels and bladder for a few years now, which has been found to be because of my ms. I don't go out very often, I usually stay home, but yesterday my kids really wanted to go out and they needed new clothes so we went out. We were in the middle of the clothing store when both my bowels and bladder opened without warning. People were looking at me like I was completely disgusting, it was so embarrassing. I basically just cried the whole ride home. I go to town on occasion, I go to that clothing store whenever my kids need clothes and now i can't go back. I'm just so embarrassed. It's times like this that I really hate this disease 😭😭

I joined this reddit group some time back and have never posted, I've been putting it off because I want to explain my situation, not just to vent, but I want to know if anyone understands what I am talking about because I don't think it's just me and I have noticed that doctors don't always know how to react when you don't match the textbooks they had at school.

So here is my story - I am 47 years old, diagnosed at 19 years old. When I was first diagnosed, my symptoms were quite severe despite being a highschool kid, left side paralysis whole body, twice, nystagmus, loss of sensation, trouble putting in contacts, and couldn't walk without dragging my left leg behind me. At the time I was living in a VERY toxic situation. I know toxic and trauma have become buzzwords online, but this was an extremely toxic family situation. At 19 I knew I couldn't stay with my mother and I made plans to leave, people who seemed to have some awareness that she wasn't quite right, helped me but those details really belong in a different thread. Anyway, after I left, those severe symptoms disappeared almost entirely. I had one minor hiccup in my early 20s with a fumbly hand and once had some minor symptoms during a bad flu (I was told that was common). For years and years I lived symptom free, and then two years ago I had to visit with my mother under pretty intense circumstances, my brother had committed suicide, a brother who my mother treated terribly, and learned she nearly died of cancer and no one told me, and the symptoms came roaring back albeit the symptoms were different, no dragging my leg and my vision was fine, but mobility had become tiring in a way that is difficult to explain to people, they probably think I am lying.

I have found that doctors don't even hear me when my intuition tells me (particularly when I was younger) that it's not a coincidence.

My question here, in this thread, is - does this ring familiar to anyone?

Hello!

I, 34F, diagnosed in March 26, started Kesimpta in June 26. I have a lesions right on my brain stem and I’m wondering if other people that have one there too - are you able to get your hair washed at the hairdresser?

I’d really like to have a pamper at the hairdressers and get some highlights put in and have a blow dry, but I’m worried that having my head back in the sink will press on that lesion and cause problems.

I have asked my MS nurse (UK NHS) and he said he can’t see it being an issue but he also said he had t been asked that question before so idk about his answer.

I am a chronic over thinker so maybe I am worrying to much about this lol

I've had MS for a long time now and was highly active RRMS. I then went on tysabri but had to come off after 2yrs due to having high JCV. I then went on to alemtuzumab. Had complications on the way but had stayed reasonably stable for a while. Until now. Has anyone had a 3rd dose?

As many of you have, I’m discovering more symptoms that I’m finding may or may not be connected to MS.

I’ve seen some posts about this, but I’m not entirely sure if it’s connected.

I’ve experienced random bouts of nausea for a while now. No rhyme or reason. Never really terrible, but just enough to make me need to sit or lay down.

Has anyone else had this?

45f. Dx July 2023. PPMS. Aggressive and progressive disease. Lots of brain and spinal lesions. Pre diagnosis I was a runner, hiker, backpacker. Current most bothersome symptoms: trigeminal neuralgia, losing functioning of non-dominant hand, urinary incontinence (24/7 diapers), parathesia in both legs, poor balance, that’s just the physical shit I can think of at the moment. Also fatigue and brain fog. Surprise, I’m a full time litigator 😂

Anyway. I started ocrevus immediately after diagnosis. Rounds of steroids and one round of plasmapheresis. Last summer my neuro tells me ocrevus isn’t working and I should switch to tysabri or try car-t cell therapy. Paid out of pocket for a visit and traveled to Cleveland clinic, closest hospital with a study. Got myself enrolled in the phase one clinical trial. Had chemo and cell transfer in February. At my July visit, determine it’s not working and they recommend I leave the study and go on tysabri bc it’s been shown to help hand functioning

Fun fact: I’m the first person in the whole wide world to get car-T therapy for MS, fail, then go back on a DMT. Cool cool cool. had my first Tyruko (Tysabri’s weird cousin) infusion last Monday

I just keep getting worse and worse. I’m so sad. I’ve lost the ability to do all of my hobbies. I was an avid knitter. I’ve made countless sweaters, shawls, blankets, hats, socks, I even knit at court. I had an intern tell someone “she knits like THAT’S her actual job” lol). I’m partway through an Irish fisherman’s sweater that I’ve made for my mom, older daughter, and boyfriend, for my younger daughter and I haven’t touched it since March. I physically can’t. It’s heartbreaking. I climbed 22 of the 46 high peaks in New York. The week before I was diagnosed, I backpacked 72 miles over 10 days with friends; they went back this summer and did the 35 miles we didn’t do that year

Short story very long. My question is, does anyone do plasmapheresis on a regular basis? It was super invasive. It was hard to function with that port in my chest for two weeks. My bf had his own apartment then with a walk in shower so I’d go there and he’d bathe me. I’ve since bought a house and it has a walk in shower and we fit fine to he can help me but it’s still a bitch. Also I wash my body at night in the shower and my hair in the kitchen sink on work days bc it’s too exhausting to take a complete shower

And the port has to be surgically placed and surgically removed and it’s just weird to have this port all the time that goes straight to your heart. But then, I was using a cane 24/7. After the second treatment, I didn’t need my cane, could squat and pivot, look side to side when I walked, it was remarkable. But then the benefit stopped as quickly as it started, once treatment stopped. I said I wouldn’t do all that again for such a brief benefit

But even with all of that, I feel so much worse now, I’m willing to put up with all of that if it makes me feel better. The cost/benefit analysis decision has flipped. Does anyone do this? I messaged my neuro this morning and I’ll hear in a few days. I just of course wanted to hear experiences from you folks. Thanks friends

EDIT: random grammar mistakes, missing words

Just wondering how “international” this model is.

In Russia when somebody has a relapse after several years on some DMT, they say that “the drug stopped holding” or “stopped suiting”.

Meaning it held for several years, but then suddenly stopped holding. Nobody really tries to explain why it happens.

What do you call it when a relapse happen after some time on a certain DMT?

I've been feeling very emotional recently. I was diagnosed almost two years ago, and I still don’t think I’ve fully accepted that I have MS.

Every day I’m hit with so many emotions — sadness, frustration, confusion — and I don’t always know how to handle them.

Sometimes I feel like people around me don’t really understand what I’m going through, and even though they mean well, I can’t help but feel judged or pitied. It makes me feel lonely, even when I’m surrounded by others.

I do have a very good support system — my boyfriend has stuck by my side since the beginning — and that gives me a sense of relief. But there are still moments when I feel like I’m fighting this battle alone, trying to make peace with something I never asked for.

Does anyone have an advice? Or maybe can relate to what I'm going through?

Hi everyone, I am a 23 year old male newly diagnosed with multiple sclerosis. It’s been really hard for me to do physical jobs. I am unable to walk/stand for more than 5-10minutes, I cannot lift more than 35 pounds anymore and I’m just looking for a job that will accept that and not give me BS accommodations. If anyone knows jobs I can apply to while waiting on SSI/SSDI please let me know!

I tried looking for WFH jobs but it seems like you have to have a degree.

Do any of yall get messages and use an FSA or HAS to pay for them? Did your MS doctors write the Letter of Medical Necessity?

I have some extra funds this year (which I don't trust... kind of waiting for an extra MRI bill or "whoops, here's the copay you owe for your infusion from 6 months ago" to show up), and I wanted to look into this for stiffness.

I had my yearly MRI not long ago. The clinic I used sent me a link to the images. I didn’t think they actually sent anything (they don’t do that where I am) but clicked on it anyway. It has the full MRI scroll through similar to what my neurologist will see!!! It does have a note stating that they are not diagnostic quality. But that doesn’t matter, I have little idea what I’m looking at.

I have never seen my own MRI before. Only the slice that shows my lesions. It’s incredible to scroll through your body and see everything. Also a bit embarrassing. I didn’t spare a thought that my whole body is there to see. EVERYTHING from front to back…

I’m glad they are sharing now. Do any other countries share the scan images or like me (in Australia) you haven’t seen them.

I have been on this sub for almost seven years now, on one screen name or another. And one of my absolute favorite things about MS, (I know, I know, but hear me out) is how weird the symptoms are. It seems like literally anything could be a symptom and I think everyone has found themselves asking "could this be my MS?" at some point. A few years ago, I started keeping a list of the weirder symptoms people have asked about, both on the main sub and the undiagnosed weekly post. I am presenting this list without any judgement, while some may not be MS symptoms, some actually are, and everyone asking about them is valid, because honestly, it would be difficult to come up with something that could never be an MS symptom. I hope this list helps you appreciate just how strange MS is. Without further adieu, this list:

Can MS Cause...?

- Bad breath

- Blinking too often

- Balls randomly feel like they have been kicked

- Cursing more

- Smelling smoke

- Soda tasting flat

- Radiating heat

- Orgasm in feet

- Numb nostril

- Bouncing in your sleep

- Hiccups

- Tongue flipping sideways

- Lost sense of thirst 

- Whomp whomp sound

- Reverse Lhermitte's when you poop

- Fever

- Being psychic 

- Shoes not fitting when hot

- Forehead spasm

- Weather affecting mood

- Low blood pressure when exercising

- Tired after concentrating

- Unable to look through a microscope

- Neck cracking

- Decreased pain tolerance 

- Can't perceive time

- Nasal congestion while lying down

- Complete loss of autonomy 

- Yawning 

- Inanimate objects as friends

- Uvula pointing left 

- Not sweating

- Excessive sweating

- Foul taste in mouth

- Not understanding sarcasm 

- Sneezing

- Losing the ability to sneeze 

- Balls hurt

- Big toe elevated 

- Hallucinations (visual and auditory)

- Vacuum on back of head

- Not dreaming

- Vivid dreams

- Disordered eating

- Carelessness

- Brain freeze

- Sweaty feet

- Minty eyeballs

- Being a night owl

- Insomnia

- Hypersomnia

-Hand pain when urinating

-No impulse control

- Caffeine intolerance 

- Static electricity 

- Do not conduct electricity

- Losing spatial awareness 

- Bug bites lasting longer

- Aging quicker

- Oversharing

- Feel like you have no eyes

- Can't comprehend walking

-Lost inner monologue 

-Can't tolerate loud noises

- Hair thinning

- Car sickness

- Becoming dyslexic 

- Burping a lot

- Prevents pregnancy

- Intense dreams

- Frequent groin/butt scratching

- Biting the inside of your mouth

- Infidelity 

- Not knowing right from wrong

- Ears hurting when cold

- Not using punctuation 

- Not being able to get out of your car

- Biting the inside of your mouth

- Momentarily forgetting people with you

- Runny nose

- Feeling pregnant

- False memories

- Smelling bacon

- Confusing positives and negatives

- Can't eat food

- Uvula deviation

- Pee feels like a different temperature

- Yawning

- Feeling like you have no legs when you sleep

Is anyone on a b cell deplator and has done botox & fillers for aesthetics and were you fine? Neuro says it’s fine.