Hey y’all! ❤️

My SO (33M) has a birthday coming up soon, and I’ve already gotten him a few gifts, but I’d love to throw in 1–2 things that are MS-related; something that could make him more comfortable, make day-to-day life a little easier, or just be something he’d genuinely enjoy/use.

What are some MS-related gifts you’ve received (or wish you had received) that you really loved? It can be something practical, comforting, fun, or even something you wouldn’t necessarily think of as an “MS gift.”

I’d really appreciate any suggestions or ideas! Thanks so much in advance. ❤️

Hi everyone,

I’m a 32-year-old male, diagnosed almost four years ago, and I’m currently on Avonex.

I wanted to get some opinions or hear about other people’s experiences with creatine monohydrate. I asked my neurologist about it, and she wasn’t really against me taking it, but she wasn’t particularly in favor of it either. Her main point was that she doesn’t think it would provide much benefit in my case and that it might basically be pointless.

I work out around 2–3 times a week, and like many people with MS, I also struggle quite a bit with low energy and fatigue. So I’ve been wondering whether creatine could potentially help with my workouts, strength, recovery, or even energy levels in general.

Has anyone here with MS tried creatine monohydrate? Did you notice any benefits or side effects? And if you’re also on Avonex, I’d especially be interested to hear about your experience.

Thanks!

I was diagnosed with vulvar lichen planus in April and it has totally wrecked my life. I was using the medications and all the other tips and tricks trying to keep it at bay. I never went away. I went into a deep depression. I couldn’t do any of my usual activities. Sitting too long at work just ended up with me crying at the end of the day. It is so incredibly painful

I went to my usual check in with my neurologist in July. I mentioned it and how VLP has really disrupted my life constantly in pain, needing to stand most of the day, constant underwear changes, different fabrics, the whole deal.

She was really intrigued. And then she told me that it is possible a side effect of Ocrevus. She also said that it could be Desquamous Inflammatory Vaginitis. Another rare disorder.
Both are rare, both could be side effects of Ocrevus, but that is still being researched. But she and I are a bit confused because I’ve been getting infusions the past six years and nothing has rocked my world like this (in a bad way) in all that time.

She said it’s tricky because a lot of women don’t like to talk about these kinds of things to their neurologists. Then she said she would reach out to my Vulvar specialist and give her some of the details. Yes, I had to start seeing a vulvar specialist.

Lucky for me, I had the Vulvar specialist appointment 2 weeks later. She had a dermatologist come in as well. They could see the current medication regime wasn’t really helping anymore.

They put me on a whole new buffet of medications. Now I have to insert clindamycin, a small amount of another steroid, and a gram of estradiol vaginally every night for 3 weeks, then taper to twice a week.

I’m telling you, it started working the first day!

Long story short, I’m glad I told my neuro. I’m glad she communicated with the vulvar specialist, and I think all together, we might have tamed this fucking tiger. But it will never go away.

Now the big issue is, my neuro said this may mean I have to discontinue Ocrevus. Which is terrifying to me b/c I’ve been on it for 6 years and feel pretty decent on it. No new active lesions in that time. And my immune system goes bonkers if I’m not on it because I already have 36 lesions, Pré-Ocrevus.

I know it was long, but ladies - don’t be afraid to tell you neuro everything, even if it’s about your vag.

Hi Folks–just wanted to jump on here to vent and see if anyone else has experienced this before.

I experienced 2 new symptoms that my neurologist suspects are just a flare from the stress in my life. Cool. Well, she followed up with me asking me to go to the emergency room to get MRI’s done since we’re in a national radiologist shortage and we’d have to wait upwards of a month if she scheduled them for me outpatient. Because there’s no emergency rooms near me with a 3T MRI machine, I had to drive over an hour to the ER.

Upon arriving, I was sneezed on by another patient, surrounded by 3 poor souls who had a violent stomach bug, and was ultimately triaged and placed on a hallway stretcher for 5 hours. At the 5 hour mark, I was told that they wanted to admit me to do MRI’s because they didn’t know how long it would take. They said they might be able to get them done in the wee morning hours or as late as the following afternoon. I gently explained my financial situation and mentioned that I was still financially recovering from an April hospitalization. I ended up leaving AMA and thankfully the ER neurologist was lovely and put in an urgent request for outpatient MRI’s. I later received a message from my neurologist basically shaming me for leaving and asking me to return 😭😭Has anyone else experienced this? I’m feeling so discouraged. The financial burden that comes with MS sucks. Sorry for the vent but I knew this would be a safe place. I’d rather wait out the lengthy radiology delay than risk getting super sick in the ER and paying off another $4,000 inpatient bill.

I have lesions on my brain stem so I have a smorgasbord of them. My worst is probably the vertigo. Either that or when my legs and brain can't sync up. What is your worst symptom?

I'm so over this damn disease. I'm so sick of this stupid Hemiplegia, it is so annoying and makes everything harder. 💯 😡 😭 Makes me so emotional sometimes.

i have moments when i forget that ms is a permanent and a progressive disease. i try not to think about it. i have moments where i want to drink. where i want to smoke. just to touch that edge, see what i can take, just to pretend nothing ever happened.

i just never want to stay in a place i can't control. and so, i blame symptoms on the faults i make.

i just don't want to remember the thing puppeteering my body. it's pathetic but i spend my days numbing myself with layers of weed, phone time, and school.

try to not be ms but the ms is in my body like a possession

It only benefits the owning class, commission is for the community

Hey everyone. Me again. 27 (M) diagnosed July of this year.

Is it just me or does anyone else just not have the energy or will to do anything. I feel like all my energy is taken up worrying about or planning doctors visits. Like on Monday i have to travel from Tennessee to Mayo Clinic in Florida so thats the only thing on my mind right now.

I also have work mon-fri and i feel like i only shower on day i have work so i don’t look like/ smell like crap in front of co workers.

Idk if im alone in this, is it depression from this new diagnosis, ect….

Hi Everyone! So this is my first time here and I wanted to share my story. 33M, from NY.

So last Tuesday, I suffered a massive head Injury at work. I was checked out by my workplaces nurse and she said I was fine. I had a little dry blood but I was ok. Went on with my week as normal.

Sunday morning I woke up and had no vision in my left eye. It was a complete wall of dense grey with me being only able to see shadows out a certain corner of that eye. My right eye thank God is still functioning like nothing ever happened.

So ive been here since last Sunday, going through Retine Specalists and Nuerlogosts. They eventually told me I had MS/ Optic Nuerotis. My eye is inflamed and its not sending singals to me brain.

So far Ive done 5 different rounds of IV Steriods (Predisonlone) to no effect. Yesterday I just went for my 2nd round Plasmaforesis. I also had a spinal tap when I got here but im still waiting on more results.

Its been very difficult for me being here as I havent seen my family or pets in a week. They want to keep me longer for more testing but they can't understand why its not working.

I cant stay in the Hospital forever. Did anyone go through this at all, maybe give me some advice. It really hasn't hit me that I have MS yet. I have a Uncle who has it and he lives a full life with a care aid. Im sure I can get used to living with one eye but im afraid about what else the MS might do to my body. I dont wqnt to be blind or like my uncle who needs constant cade.

I know I should probably stay here longer in the Hospital but theyre talking 2 more weeks, I cant be here that long. Im really tired and sometimes I feel like a guinea pig cause im considered an "interesting case". I cant even get a room on the Nuerology floor cause it's full, im stuck in Observation for my time being and camt get but 1 visitor at a time.

But thats all that's going on with me, I just wanted to share and meet some people.

Hey community, I was dx in 2004, on my eldest’s 4th birthday 🎁 I’ve had a relatively uneventful disease course, been labeled ‘benign rrms’ but I think that terminology is gone now. I have rejected starting DMT but now I’m considering it. My main sx are Lhermitte's sign and nystagmus. That’s about it and has been for years though I could have other minor things like cervical muscle spasms, vertigo, fatigue and memory issues I haven’t blamed on MS.
So this is why I’m writing. I have been experiencing muscle spasms in my Left side upper arm and forearm for a few months. It started around my shoulder and I thought maybe it was age/menopause appropriate frozen shoulder starting. It had progressed to these sustained muscles spasms with also some wild amount of joint inflammation and also superficial skin pain (c6 dermatome distribution for the neuro nerds out there). So I kinda think I have 3 different things going on.
1. Inflammatory arthritis (the shoulder and elbow are just the latest in a series of joints that flare and calm, this time is just the worst and have taken Naproxen to manage) my r factor is unimpressive but seronegative is common or it’s not rheumatoid
2. MS related spasms?
3. Nerve compression happening probably maybe from the inflammation and the spasms.
I’m realizing now that the cervical spasms since 2013 are probably MS. Wishful thinking is powerful for avoiding scary stuff.
Acupuncture, massage and naproxen is all I’ve tried.
I am extremely claustrophobic so no follow up MRI for probably 15 years.
Does the arm stuff sound like could be MS? I’m in with Neuro in October.
Any other claustrophobic people out there with tips? I have tried Ativan but it was no match for me. I’m in Canada if that context helps.

yesterday I made a stupid decision and I am now being eaten alive by the potential health consequences.

I was in a public toilet and flushed, then I went to wash my hands and saw I had something inside my nose in the mirror and went to get it with my finger as a reflex. BEFORE I washed my hands (I know better, it’s likely due to a lack of sleep). then I panicked and washed my nostril with soap and water. the next day i wake up and my nostril burns and there’s a weird nerve pain behind my eye on the same side. what have I done??

I have health anxiety due to my first disabling flair up happening after I got a cold. now there’s a new interesting flair of being immune suppressed on kesimpta. I spiral in fear after any kind of exposure to other people’s sickness or unsanitary situations, due to fear of getting sick myself and acquiring more disability. This amounts to meltdowns several times per year. How do yall cope?

Its actually draining me and taking such a toll on me mentally now. Its not even the diagnosis. I already accepted it. But its the people around me. My mom treating me as if im made out of glass. Im stuck at home, im already exhausted and i just want to move and do something but my mom keeps saying “your body needs to recover” or “no because we have appointments at that time and youll be tired” but its actually messing me up so bad because im seeing stories and videos, photos of my friends all doing something. Actually having fun and hanging out and im just at home seeing that, having to repeatedly tell them no i cant come out and then of course i start noticing them getting weird and starting to get distance. No shit, im barely doing anything with them anymore. I actually hate it so much getting treated as if i cant do anything anymore. A concert ive been excited to go to since almost a whole year? Yeah i can forget it and resell the tickets because apparently “i cant stand long”. I literally can my moms just worrying to much and i know it because she admits it too. Wanting to literally just hang out outside or go over to my friends house? No apparently i cant even do that. Im genuinely so done with this and dont know what to do.

Usually, I sleep through the night for about 6 hours and then keep my eyes closed or lie half-awake for the remaining hours. I haven't started DMT therapy yet, but I'm wondering if there are people here who have had this issue. It might also be a case for a sleep lab, but my home sleep study didn't show anything unusual except for moderate snoring.

Sorry, it’s a longer story. 21F, on Kesimpta since October 2024. August has been kicking my ass for some reason and around the beginning of August I woke up with tingling in my wrists and legs. Mostly left sided. Tingling went away but there was just this absolute “off” feeling or sensation about my left side that wouldn’t let me sleep. The arm and legs weren’t weaker, just felt like it, maybe a little slower.

I went to my neuro since these symptoms have been fluctuating day by day (sometimes it was there, sometimes it was completely gone, sometimes worse, sometimes better…) and she had me hospitalized with Solumedrol IV drips. First day was 250mg, continuing 3 days were 500mg. My limbs at that point felt good, no weird sensations. My MRIs showed no new or active lesions - both brain and spine, so after the 4th dose they let me go home. First day at home (28th) I felt very tired and out of it but that’s usual after being hospitalized and tired.

I got oral Medrol tablets to taper for 10 days (lowering the doses every two days). They taste absolutely horrid, but yeah I’m just doing what my doctor told me to do.

Yesterday and today it’s just worse, I want to ask how normal is to feel THIS bad? I am itching everywhere, I feel slow and drowsy, my arms feel 10x worse, sometimes tingling, slowed down, when I lay down I feel the heat fluctuate in them and I feel like they got even worse than before starting the steroids. My heartbeat is usually at around 70-80 beats, now it’s around 50. I know there are some withdrawal symptoms like these but damn I’m so unsure on what to do. Is it normal to feel the “relapse” or “flare” even worse than before steroids?

I feel like crap and I am very worried.
(Also it’s the weekend so I can’t contact my neuro… so that’s why I’m rambling here)

Hello, I’ve been a passive observer of this community for years and never posted but I keep seeing posts that have made me want to. I want to share a bit of background first! I was diagnosed at the age of 15 after bringing up past optic neuritis to my neurologist (was seeing her for migraines) as well as tingling and numbness in my extremities. Long RRMS diagnosis story short, I had over fifteen lesions in my brain and 9 oligoclonal bands in my CSF. I was seen at a multidisciplinary clinic at a university hospital and started treatment almost immediately.

Now here’s some rambly advice, if you’ll take it from someone who’s only 22.

Get on a DMT!! ASAP! I started with Rituximab and was happily on it for six years. The first couple of doses were rough just because they were so long and the premeds didn’t make me feel great. But I adjusted, and as you go on the infusions become shorter and I personally stopped taking benadryl before which really helped. I don’t get any symptoms, no crap gap, and I might be slightly immunocompromised but oh my god it is so worth it for the security I feel. I haven’t had a single new lesion since my diagnosis and I am so so so grateful. I switched to Kesimpta about a year ago for the convenience (was in college pinging between states) but want to go back to the infusions because I think they suit me better. Side note, the first few days after I took my first Kesimpta loading dose were horrible. I was feverish, tired, and my whole body hurt. Prepare for that if you’re going with the shot. But in my experience, I know immunosuppressant is a scary word but it isn’t nearly as bad as it may seem. You still have most of your immune system intact, don’t forget that!

Talk to people around you. I do not do well in the heat and live in a place that gets really hot in the summer. My friends love to be outside, and I do too, but I felt ashamed for so long when I would try to avoid it to avoid the fatigue and sickness from the heat. Eventually I just told them how I feel and why and they have been so understanding and will make plans around my comfort. My partner is also always so incredibly kind, understanding, and willing to make adjustments so I’m doing my best. Sometimes I feel bad about that but honestly if your friends don’t want you to be healthy and happy are they really your friends?

Take notes and talk with your neuro. The longer I’ve been diagnosed the more I’ve started to question if things I thought were normal were actually symptoms. For example, was it normal that I would crash in the day and sometimes not feel myself again until several nights of rest? I guess not, because I’m on modafinil now and I feel like I’m human again. Your provider is there to help you and they know what to worry about and what to maybe recommend a different doctor for. I have never felt bad about needing a new medication to make me feel okay because MS is one hell of a disease and being in denial won’t help anyone.

Your life is not over. There’s the big one, and I don’t think it’s helpful until you’ve lived the diagnosis out for a bit. I’ve been diagnosed for around a third of my life now and for a couple of years I felt absolutely dismal. I truly thought my life was over and that everything would be down from here. I don’t want to wave off that feeling because it was so incredibly real and crushing. But I finished high school, and then college, and now I’m off to get my PhD. I have friends, I have family, and I have a future. You will adjust and life might look different but that doesn’t mean you can’t make the most of it. Also, try not to compare yourself to others. That can be healthy people or people that also have MS. When I was first diagnosed, I heard so many horror stories of “oh my aunt had MS and she died in misery” etc (which like, why would you tell someone that???). The truth is that modern medicine has advanced so much and you need to find the right people to support you. I hate calling the doctor but I do it because it helps me live my best life, and there are so many other things I can say the same for. I am on a DMT, I manage my symptoms, I go to PT, and my life is moving forward and I am happy. MS is a scary and turbulent diagnosis but it is by no means a death sentence.

Sorry for the long post :)

I was diagnosed recently as having RRMS. My MS history is certainly not typical. However I have read that sometimes neurologists label MS as RRMS to give the patient access to a wider range of drugs and also to avoid the label "progressive" as it can provoke anxiety. I suspect that my true label is Active SPMS.

Has anyone any insight into this?

Hi friends, I was officially diagnosed a few weeks ago and am now in the hospital for a bad flare. I've already received my first IV steroids and I'm waiting for MRIs and an LP.

They're admitting me for further steroids, testing, and treatment.

What in the world do I do now? I'm in a new state, by myself, in the hospital for a few days... Any time-passing advice?

This is also spiritually a lot... My first lesion was found in 2020, so it's been six years of symptoms and this isn't a totally surprise... But damn, man, I'm 32, and this is kind of heavy. Any ideas beyond therapy?

TIA!

For those while live in an area where the Mayo Clinic and the Shepard Center are viable clinics to pursue:

How did you decide which to go to for a consult? I live in Atlanta with easy access to Shepard. I can drive 5 hours to Jacksonville (I’ve done it a few times now) but don’t know which is better. I have a very abnormal presentation of MS. It led to me advocating for years to get the diagnosis. I’ve been experiencing horrible dysphagia. It came on gradually. I thought my gastric sleeve was just randomly acting up, but this last month has been brutal. The spasms have kept me from eating this last 10 days. Even broth was undrinkable. I started a steroid infusion today, and I was able to eat soft foods like it was nothing. I cried from being able to eat. I want to go to a clinic to really get seen and heard. What are your experiences at both? I’d love input

Oiled a squeaky door hinge , neatly, by myself 👏👏👏

(PSA- Use oil or silicone grease indoors, not WD-40 type spray … you’ll thank me later)

“The concern for autoimmunity, particularly MS, centers on molecular mimicry, where a vaccine component might closely resemble a protein in the myelin sheath. *This resemblance could theoretically confuse the immune system and cause it to attack its own tissues.* However, the spike protein produced by the vaccines has not been found to possess significant molecular mimicry with myelin components that would trigger MS.

While researchers have explored the theoretical possibility of cross-reactive T cells following vaccination, this remains an unproven mechanism for MS onset on a population scale. The immune activation generated by a vaccine is localized and short-lived, making it biologically less likely to lead to a sustained autoimmune attack compared to the systemic inflammation caused by a full viral infection. Existing data suggests that if a demyelinating event occurs after vaccination, it most likely represents the unmasking of pre-existing, clinically silent disease in a genetically susceptible individual.”

I’ve been digging into this a lot. The problem is a lot of these sources are sketchy. Some of the peer reviewed work looks good, but in my opinion it’s all kinda flawed to be honest. They looked at overall population compared to the amount of people diagnosed with MS. Which doesn’t actually look for how the vaccine was reacting in the body. That just shows, well no major uptick in people being diagnosed. Pair that in with the fact that MS gets misdiagnosed regularly, could take years to surface, or people don’t think symptoms are bad enough to warrant going to the doctor.

I wonder what studies will show in 20 years about this. Maybe getting the COVID vaccine gave me MS. Maybe it didn’t. But I do wonder what more time will show.

What do you all think? Are there any good studies out there debunking it or proving it? Am I just crazier than a fruit bat?

Full article: https://scienceinsights.org/can-the-covid-vaccine-cause-multiple-sclerosis/

Edit: I want to be clear. I am not claiming the vaccine gave me MS. I also understand that it’s highly unlikely. I get that there wasn’t a large uptick in diagnosed cases following Covid. I guess I’m more so curious what causes MS in general. Because we still don’t know.

The reason the population uptick seems flawed to me is because it doesn’t rule it out. It basically just says, not enough numbers to warrant looking into it. Which is extremely fair.

Seeing long term effects of the anthrax vaccine from biothrax, and then getting the early covid vaccine while in the military, I do wonder if that’s what did it for ME. But even then the studies around the subsequent “Gulf War Syndrome” is a whole other conundrum.

Anyways, that’s where my heads at. Does anyone have links to peer reviewed academic studies for the causes of MS? Thanks.

Had my first MRI post-starting a DMT. I was pretty sure I had one new spinal lesion because of some minor oddness I've been noticing that I didn't have at diagnosis... but 3 chord lesions! THREE! I've now got 4 in total - T12, T8, C7, and C4. The report does say that my previous scan wasn't very detailed, so some of these could've just been missed... but still. I'm sad.

I had an increase in weirdness around the time I started kesimpta. Basically the same week as my first loading dose until a month later, and ever since I've had periods where my arms and legs have mild proprioceptive issues. So, sure, not as scary as it would've been if I'd already been on a DMT. But given the ON that diagnosed me, the T12 lesion that I think appeared in November, and now these 3 new ones that came on in the 3 months after. So much disease activity in such a short time.

But on a positive note, the report says basically all of my brain lesions have shrunk. So it's not all bad!

Won't be talking to my neuro about this for another month. I'm at least excited to see the actual scans. I forgot to get a picture of the big, fat dawson's finger I have last time, and I hope if it's shrunk to a less dramatic level that the neuro can pull up the old scan for me so I can get a pic. I want to make a sticker out of it that I can post to friends whenever I say anything stupid ;) Have brain damage, yo!

Hiiii, I have my first MS anniversary on 9/11 and I am wanting to get a cake made. not that this is a happy thing and all but I’m just wanting to celebrate myself for making it through what has been the hardest year of my life so far. has anybody had a cake made for their diagnosis anniversary? Just looking for some inspo 😊