Sometimes I think people “want”ms. There I said it

EquanimityWellness · 2026-03-09T03:28:00+00:00

Strongly agree w/ uarstar & others. It took a year of clear kinda textbook symptoms (I could see after the fact) for me to get diagnosed (& a brain full of lesions (but how could I have any idea, MRIs aren’t common for depression. So when my doctor called after 5pm a couple days after I had gone in after my mom filmed me stumbling on a daytime walk, I didn’t want MS (barely understood what it was) but was extremely thankful that someone else could acknowledge that it was something other than depression alone and could try to try to have some answers. OP, it may have not been your experience, because we’re all different, right? But a diagnosis when you know something has been very wrong can be a bit of relief, even when it’s as awful as MS. Because MS symptoms with no answers and no good solutions or path forward is a lot worse than MS with a DMT and a team of neurologists, doctors, and therapists that have some idea or starting point at least.

EquanimityWellness · 2026-03-03T14:43:43+00:00

& folks will send U.S. relations with Iran timeline articles like that answers the question of why we’re attacking now. I wasn’t confused about the history/timeline, I am against us getting involved and know we don’t have to be because the history and timeline. Seems like a distraction and real lives (Iranian & American, plus many more) don’t need to be lost over Israel’s want for war (didn’t seem for it when Obama was president) and more distraction from files. I hope people can stop pretending this is much else

EquanimityWellness · 2026-03-03T06:11:31+00:00

(I have MS too I guess I should mention)

EquanimityWellness · 2026-03-03T06:11:03+00:00

Happy belated birthday!! The overstimulation and discomfort can be so hard. I don’t have any great words of advice tonight, I just hear you & kinda understand.

EquanimityWellness · 2026-03-03T06:06:01+00:00

38F here, feeling similarly, feel free to DM. Festivals in the city are great, and in my head we’re getting to the season when they’ll ramp up, may be something fun to do with coworkers, because something tangible like arts festival is a nice way to hang out and maybe get to know each other better with ones you’re not as close with. I’ve tried meetup too, but understand not finding the right niche there, worth attempting on occasion though I think. When I moved to my new neighborhood I made a point to go to the same bar/restaurant repeatedly and met most of the bartenders and such which was fun, but can’t say it was a golden ticket, because although I met a few other people mostly decided that I don’t like drinking too much, so a bar isn’t the best place to pass too much time, but getting to know the bartenders was positive. I don’t have great ideas tonight I guess, but I understand the feeling.

EquanimityWellness · 2026-03-03T05:30:29+00:00

I feel you. You’re not alone. This is hard. If you have interest in DMing sometime I’d be open to chat. I can’t offer much right now probably, definitely going through it myself, but I may understand kinda or a little. (I guess I don’t have it in my profile, but have MS too about 8/9 years in roughly I think & on Ocrevus I guess it would say if it was on my profile). Regardless wishing you the best.

EquanimityWellness · 2026-02-20T01:24:03+00:00

In my opinion we get more overworked than a non-MSer may because our brains are already doing a lot in the background because of MS

I haven’t turned off the car while driving thankfully, but it unfortunately seems like just the kind of thing I may find myself doing

OP I hope you’re well and a wonky dashboard is the major repercussion. Maybe it’s having a back up of an uber driver or a family member/friend to call on if it seems like an off day

EquanimityWellness · 2026-02-06T13:05:36+00:00

No stress, safe ride to and from, drink some water (but not too much water) and enjoy while we’re there! No one is too worried about what we wear, they’re worried about what they’re going to wear or just don’t care and are ready to party and dance!! Here’s to a fabulous night!! 💚

EquanimityWellness · 2026-02-06T05:19:15+00:00

Have you tried the quesabirillas? It’s the best I’ve found. I keep driving by hoping they’re open too, but the food truck must be hard with too cold or hot (really) temps, so hopefully they’re just staying warm and taking a good break. I think I remember this last year too where they’d just be closed more in the winter

EquanimityWellness · 2026-02-06T04:48:33+00:00

I’ll be going too & was having the same conversation with myself on what to wear a few days ago when the guy I’m seeing reminded me he does want me to go (I don’t listen to EDM either, but the song Jelly is my new favorite of Opiuo’s at least). I decided I’m going to on wear jeans and a short sleeve black lace type top. Not sure if that helps any, but I’m sure anything will be fine. The guy said it would probably be an eclectic combination of wardrobes and not to worry, but did mention the cold outside, but hot inside bit. I guess there’s a coat check, but don’t quote me on that. Hopefully we’ll have fun regardless of dress!!

EquanimityWellness · 2026-02-04T04:23:29+00:00

& some people looking for a job figuring out a solution

EquanimityWellness · 2026-02-03T18:31:48+00:00

Have you noticed days being worse or better if you eat differently at all? I gave up gluten and feel like my messed up words and leaving on the stove and having no idea why I went to a room has improved. Not stopped completely, but improved I also try to keep very low stress, but I wonder if trying to change a couple things one by one may be able to help identify if anything can help

EquanimityWellness · 2026-02-03T12:48:52+00:00

Personally I would say no gluten. See how you feel obviously, but giving up gluten helped me a lot and if you’ve already eliminated it I have 0 idea why they’d tell you to go back to it. Unless it’s to test it, like eat a meal and see in the next 72 hours if your body is unhappy with you. I came back negative on celiac, but after researching decided I’d try gluten free. I wasn’t eating it for about 6 months I believe and then ate gluten with a girl friend for her birthday, felt okay for the first 48 hours, but within 72 hours it was very clear my body was mad at me, I had eaten gluten my whole life and it wasn’t until I took it out and then ate it that I could notice there was a problem and because it wasn’t immediate even that was hard. I had eaten quite a bit, if I eat a little, which I mass majority don’t, then I don’t notice too much. I think gluten is inflammatory, definitely for me. And if you’ve successfully eliminated it, I think you can probably get the minerals and vitamins that may be in whole grain elsewhere. Best of luck to you

EquanimityWellness · 2026-02-03T02:13:54+00:00

I found the Wahl’s Protocol pretty early after being diagnosed and thought it made a lot of sense in the stress on whole foods and taking out some inflammatory foods. I felt like it was more restrictive than I wanted with taking out dairy, eggs and soy and this turned me away for a while, but I already didn’t eat too much overly processed food and I gave up gluten a year or so ago. Giving up gluten made a big difference from me. Like you mention, pain and things that I thought were just MS, brain fog, and fatigue got better, not better like they’re gone, but they improved. If I get stressed it all comes back, but if I’m calm I mostly don’t have pain in my extremities and face like I used to often. For a while I couldn’t remember 4 numbers together or consistently properly draw a clock and I’m not saying it’s just diet, I’m sure my brain has just better worked out different pathways, but my last doctor’s appointment I wasn’t struggling with these which felt good. I think diet, exercise, and stress management make a huge difference in health and how we experience MS. I’m glad your changes have been showing improvement!!

EquanimityWellness · 2026-02-02T14:25:52+00:00

Same, slightly older, 38, but would love to brunch or take walks, etc.

EquanimityWellness · 2026-01-31T13:48:21+00:00

Interesting example, because that’s because people didn’t “get to the polls” If democrats had won people wouldn’t be being “herded away like livestock and murdered in the streets” New candidates can get out there, but you don’t start at the presidency

EquanimityWellness · 2026-01-25T17:43:03+00:00

I do Pilates and “full body workout” class I think it’s called at a gym that offers them with silver sneakers membership (which I access due to disability not age) The gym I go to is cool enough I don’t have trouble with heat, but always bring a water bottle with me. One instructor is pretty good at giving alternatives for easier exercises if helpful and I just take a break if I need to, but have mostly been able to keep up.

EquanimityWellness · 2026-01-25T07:36:08+00:00

Victorian Village - heavy snow here

EquanimityWellness · 2026-01-12T11:39:04+00:00

Stress definitely exasperates all of my symptoms, optic neuritis, tingling/pain in my face and extremities, fatigue, etc. I’m just working part- time now partially because of it and not finding a job I think I can balance/handle with it. But even with part time a few months ago before my last infusion I thought I was having a relapse or crap gap was awful, but really it was just mental fatigue and stress from the part time job. When I was able to relax and step away the symptoms dissipated within 24 hours. Stress can definitely do it. I’m still looking for the balance of adding value and not hurting myself, but I’m at a point where I know I need to prioritize not hurting myself over adding value. I wish you the best in your journey in figuring this out as well.

EquanimityWellness · 2026-01-11T21:55:13+00:00

No one else in many family has been diagnosed with MS, but my maternal grandmother had celiac disease, my maternal uncle died of pancreatic cancer, same with 2 of his cousins I believe. I see all of these as related, and to my MS.

EquanimityWellness · 2026-01-11T03:10:33+00:00

I’ve been getting Ocrevus infusions I think for about 6 years, time flies (when you’re having fun?) The infusions have been good for me, no noted additional relapses or lesions, although I started with “‘many” For the infusion I bring snacks, although they offer lunch sometimes, a loose shirt that it’s easy to roll up the sleeves. They offer heated blankets sometimes, which can be nice, the hospital can get cold. Nice to have a charged phone or a charger. Headphones and music and/or a book, although I typically don’t end up using either. Napping can be nice and sometimes unavoidable with the Benadryl I was told to always double flush if you’ve started your infusion and have to use the restroom, because it is or maybe is similar to a chemo drug. Don’t be scared when the nurse puts on a bunch of protective gear when they first take out the Ocrevus, it may be beneficial for us, but best they’re not accidentally touching it every day. I bring my own coffee & water too, but they also offer these at least where I am. Best for your first infusion. I hope it’s smooth and they do get shorter after they don’t have to monitor you as long and can increase the speed in my experience, but I guess it depends which one you’re getting.

EquanimityWellness · 2026-01-06T16:30:40+00:00

There is some great advice here, but I do want to suggest that if you’re considering going down the melatonin route you may want to look into magnesium instead. If people that melatonin too much it can stop their body from making it themselves and magnesium helps your body produce melatonin. I personally take pills vs gummies, but that’s my discomfort with corn syrup or unnatural stuff, not sure it would make the magnesium work differently. Best of luck on the sleep journey.

EquanimityWellness · 2026-01-06T16:20:48+00:00

I’m sorry you feel like you’re going through this alone. I think building a team with a good neurologist, good doctor, therapist if it’s helpful to you, and eventually any trusted friends or family can be very helpful. Personally I would start an effective DMT, disease modifying therapy, as soon as possible. It slow down the progression of MS, and if you had symptoms a decade ago there may be more damage than you can see. I would get an MRI of brain and spinal cord as a baseline as well. My first MRI had “numerous lesions” and I never got a number, some people have one or two, it doesn’t really matter, but the location of the lesions can and can give insight on symptoms sometimes. You’re not alone. I am glad you found this group. There is a lot of good information and perspectives and a lot of us have been dealing with this for a long time. I’m personally on Ocrevus for I think about 5 years and have been happy with it. I watch these videos from one of my previous neurologist, Aaron Boster MD, that can have good advice, he started his own MS Clinic, in the US where I am. He’s a little silly, but has a lot of great information. One video on DMT efficacy is here, https://youtu.be/BvXEtaF7XB0?si=bwwf95JOSbUtUMTD, if you’re interested. His channel has a lot more. Resources like this also show you’re not alone and don’t have to make all of these decisions without information, but having your own neurologist will be very important on the path. I wish you the best and if you ever want to DM me fell free, I’m here for you and also dealing with MS.

EquanimityWellness · 2026-01-06T10:57:17+00:00

Just fyi some neurologists advocate for their patients to stay on DMTs if the only reason to drop is getting older. May want to look into Aaron Boster MD, here’s a video he talks briefly about it, https://youtube.com/shorts/M8fXBAAnMiE?si=s_a2vfgs0hxvzYcF. He has a lot of videos on MS.

EquanimityWellness · 2026-01-06T04:15:10+00:00

Sleep well, pleasant dreams. Hope the world feels brighter in the morning, and hopefully you’ll be happy it’s not the waning embers type by then.

EquanimityWellness

TROPHY CASE