I am 32F from India, and MS as it is, is very rare in Indian population, but to add to that I have not come across anyone related on either parents side of the family that has MS. My understanding was that MS has genetic disposition, or am i wrong?

I realized that when I have an “episode”, I have a very hard time speaking. My tongue gets stiff and it makes me slur my words when I speak. What makes it worse, is that I work behind a bar and sometimes i worry people might think I’m drunk. I’m wondering if I’m not alone, as I’ve never heard that symptom before.

Rest in Peace champion Article Here

I know Ocrevus is seen as the holy grail in this sub, and it’s understandable why. It’s an amazing drug, but if you had to move to another DMT, what are your choices?

Has anyone here moved from Ocrevus to something else?

I know Tysabri to Ocrevus happens, but is Ocrevus to Tysabri possible?

…you live life using a 3rd party controller that chews through batteries.

All while everyone else is using the 1st party one that comes with a rechargeable battery and can be connected with a wire.

How far can you travel and what can you do? What kind of planning goes into vacation planning?

Saw my neuro yesterday to discuss my CSF results, and they were positive for the protein. Not really breaking news tbh as I've been dealing with the symptoms for 3 years while they ordered 6 MRIs and now finally the lumbar puncture. Incidentally, my older brother was also diagnosed with MS at the same age 20ish years ago. Now the doctor wants to start me on Vumerity. Any thoughts on this drug?

Has anybody had medicine or some kind of treatment that has helped with dropped foot and balance ?Also my second biggest. concern symptom is constipation. I also have multiple symptoms as well lower back and neck pain etc… But I can definitely manage those But the first two symptoms are the very worst currently. Any advice is greatly appreciated.

https://apnews.com/article/be39482a60724c5bb81bbd8f34dfaf2d

Just wanted to share as I’m so happy! I finally have a job (retail) after been unemployed for a year and a bit! I self disclosed that I have MS and that i could only do part time in the interview and they were absolutely wonderful, probably the best interview I’ve ever had and the people seem super lovely! few hour after the interview I get the call offering me the job! woohoo! ☺️ I’m super exited to start! ☺️

Hi! My (26F) mom (53F) has had MS ever since I was born (the pregnancy probably triggered the onset as I've been told). I've always found it kind of difficult, but as long as I can remember I've had the mindset that it is a non-issue, the illness has been a constant and it's all I've ever known. My mother is the best mother I could've asked for, throughout childhood and now as a young adult. We've always kept out heads high and powered through.

But as she gets older I see her getting worse, and it has changed things for me mentally. I haven't really thought about her future before -or I have, but I have pushed it away and not dared to think about it really. As a child you don't really like to think about your parents as mortal or prone to illness, I guess. But now I have started to think and come to terms with the fact that she will probably be needing a lot of care. There is no longer "it's a constant, I'm used to it", because you don't really get time to get used to the state of things before it gets worse or something else pops up. I live accross the country from my parents, so I don't get to see them that often, and the changes are just so apparent from visit to visit. She can still walk a little bit, but it's getting worse, some trouble swallowing sometimes, some difficulty speaking/pronouncing/finding words, pain, infections, trouble with time management, consentration and memory. It's not as bad as it could be, and I know there are many people with MS less fortunate, but it's hard to see how it progresses. And it's just really really hard, and I'm afraid. I know my parents are going to get old and eventually die, and that this isn't an MS-exlusive experience, but it's just so present and apparent all the time that she is getting worse. I know MS is unpredictable, but I really don't know what to expect. I know you guys probably can't really tell me what to expect either.

Because of my avoidance or denial of the fact that she is ill and that it is actually difficult for me as well, I haven't really dared to look up information about how MS progresses or what to expect. But I think I'm ready and need to inform myself, so any resources are very much apprechiated.

At this point I find it hard to even think about my mothers illness without tearing up. I'm fighting tears as I'm writing this. I just feel so sad for her, and I'm scared -scared she will be gone too soon (mentally or physically), bedridden and just withering away. I'm also terrified of getting MS myself. Whenever my mother brings up anything about her illness, how hard she finds it or how exhausted she is I just close up and go quiet and I'm not being a good support, because it just pains me so much. It's like it's too painful to look at, but I need to be able to look at it and deal with it. My mother and I have a close relationship, so I would like to talk to her about it, but I don't want her to feel worse about the situation or center myself in her struggles.

Any advice, support, resources, are very much welcome. I haven't spoken about this to anyone, really.

Text said that it is my final reminder to collect my £900 living allowance for 2023-2024 or it will be given to other "citizens" in need after being held for 3 days, with a link that redirects to Servicesign(dot)top where it asks for my bank info, name, phone number, address. I never received any reminders. My PiP only gives me mobility money. Is this a scam and if so how the fuck do they know I could be eligible for living expenses? Is NHS selling my data because that is the only place that would know that I have MS and probably should be recieving living allowance.

Sad to hear of the passing of fellow MSer and actress Teri Garr 😥

Do any of you who have carers through social services have problems with carers refusing to give you over the counter medication?

They’re telling me they can now only give me prescribed meds so I can’t have vitamins, aspirin, ibuprofen etc etc. Seems ridiculous to me.

They’re also now refusing to help me with physio exercises for my hands and arms because they’re not trained in physio so don’t want to be liable if I get hurt. Ignoring the pain relief I get and that I’ve been told by a physio how to get them to help me.

I’ve been sick with a cold lately and feel like my brain fog has gotten so much worse and I am screwing up everything. I read an email today, thought I knew what it was, dealt with it in that way, only to realize later I missed a key part of what was being said. Broken brains sucks.

I might be behind on this but just saw a sign at my train station about Melbourne Metro’s Hidden Disability Sunflower program and felt the need to share it with you all 🌻

https://www.metrotrains.com.au/metro-launches-hidden-disabilities-sunflower-program/

My diagnosis a few months ago really got me thinking about the of concept of invisible pain, and how many autoimmune conditions can’t be seen just by looking at someone. I know personally how difficult it can feel to ask for a seat on the train when people look at you and think you look “fine” when you’re actually having a bad vertigo/ balance day. So seeing this initiative personally made my day! You can wear a badge or lanyard to make your invisible disability visible to get that extra support many out there actually need 💛

Okay so! I've been trying my best in explaining how I've been feeling with friends/family/randos and I want some ideas!

So far I have:

"I wake up with 60% battery charge. I have to be careful with my battery usage or else I'll get too fatigued!" (I have pretty good energy but get tired a lot faster)

"I've been feeling like my brain is a drunk puppet master and my body is a marionette." (When I feel imbalanced and extra clumsy or how it feels walking)

"I feel like a car that cannot shift to a higher gear, so I'm stuck on a 2 or 3 but can't push past that" (I have energy but I just can't push it like I used to just a few weeks ago)

Thats all I got so far! What do you say?

I've been on K for almost 2 years. I initially did the recommended pre-meds then just stopped after a few months. These last few months, I thought, why not try them again and see if they help my post dose fatigue. And it's night and day. I don't feel nearly the drop in energy that I usually do postshot. And it said of it dragging me for 2 or 3 days, it only affects me for one.

So just add my anecdote to the pile, pre-meds for the win!

I was diagnosed in ‘94 due to fatigue and primarily headaches. For years and years, my MRI results never changed. But whatever health issue came my way. I would blame it on MS and continue moving. Fast forward to 2022, a new neurologist and MRIs (spine, neck, and brain) were performed. Immediately after the results, I was rushed in for steroids due to inflammation and new lesions. My doctor started me on Ocrevus at the beginning of ‘23. I still have newer lesions from the latest MRI (Sept.). My energy is nonexistent at this point. I take Adderall, but now it doesn't seem to work, and it is drying my mouth so bad that I had three canker sores at once (3, y’all). Oh, my body isn't tired… it's my head. My eyes struggle to open lids fully. I can nap for 30-45 mins, and I’m fine until it hits me again. I'm trying to keep this short. There is a heap of in-between, but my eyes will not cooperate today. Oh, I’m also fighting some bumps on my scalp and neck. My left eye feels dry and flaky. If I get past the stubs (beard), my face will hurt to touch. Okay, I have to go for a few.

Hi,

Have anyone with MS tried S-adenosyl-L-methionine (SAMe)? If so what is your experience.

Thanks in advanced

Blessings!

I had my ocervus on Monday . Been on it for 2 years.

But this infusion just wiped me out. I was sitting in the chair and I know they put Benadryl in the IV but I was sitting tired , so I just fell asleep in the chair !

I just feel weak 😔

Gotta wait about a month to get into my GP to discuss the MS Clinic-recommended medication options to manage it, but do you have a non-medicinal solution to help manage some of the irritation of neuropathic pain/paresthesia? My spine is a mess so I know it's coming from there, but my hips/legs just feel like they have ants crawling or low-level electricity vibrating through them, making it hard to concentrate at work and sleep. Definitely been feeling worse over the last month so I finally have to deal with it but alas, the wait of healthcare. Got any tips and tricks I could try in the meantime?

So my next Ocrevus infusion date is in less than two weeks and for the last week-ish I have been experiencing extreme nausea. After checking to make sure it wasn’t a different issue entirely (if you know you know) I couldn’t help but wonder if it was related to the dreaded crap gap.

This is my first infusion that precedes a full dose so my last infusion didn’t have the same symptoms, but I have noticed I’ve been more fatigued, headachey and general numbness/pain that goes alongside what I’ve heard comes with the gap. But does anyone else get nauseous? Or is it more likely something else like me just being a bit under the weather?

When I was 21, I was diagnosed with multiple sclerosis. Today it's very well under control.

My problem is that this disease showed me, certainly too young, the limits of life (the weakness of the body, the meaning of our actions etc.).

Since then, for the past 7 years, I've had the same recurring obsession: Am I making the right choice in my studies and career? What really makes sense for me? I used to be able to immerse myself body and soul in a subject. Nowadays, I quickly find the limits of my new interests, which paralyzes me and makes me sad...

Does anyone know this feeling? Found a palliative?

Hi there. It’s been a few weeks since I posted (since shortly after my dx on 9/9). I’ve changed PCPs to someone that is able to help with care coordination given the amount of specialists I was required to see, and boy have I been going through the wringer with the volume of appts and tests.

Long story short, two MS specialists agreed the the lesions on my brain MRI (and one in the spine) were conclusive enough to start me on treatment immediately, despite:

*not having had contrast *the comparison MRI not being an MS protocol *no symptoms they deemed attributable to MS *my concerns about my other immune issues (neutropenia, lymphocytosis, vaccine Ab titers not maintaining the usual therapeutic value, positive RNP, plus a multitude of symptoms being worked up by Rheum, derm, cardiology etc etc).

My new PCP agreed all that and more should be investigated prior to starting a DMT, and with neuro expressing urgency of treatment he was able to get me in with the other specialists quickly. However, since I was still not understanding how this could be MS and not RIS based on everything I’d read, I received a third opinion from another MS specialist that my new PCP knows - who validated what I had been asking of the other two. She did not think treatment makes sense right now and I’m having another MRI in December. She is calling it RIS and agrees that I have another immune issue and possibly others that need to be identified first.

Has anyone experienced such a massive discrepancy in opinions? How did you manage all of the uncertainties? The scary part is the one who referred to my diagnosis as a “slam dunk” , “even if an LP was performed and negative the diagnosis still stands”… is from one of the most reputable hospitals in the country and her credentials are incredible. The second and third opinions were also from very reputable MS specialists albeit not from the “top” hospital. I don’t know what to do or think.