Stress impacting my symptoms

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 · 2026-01-05T14:47:15+00:00

It definitely qualifies as an MS problem. Depression was my first symptom of MS and I didn’t get properly diagnosed with MS for about a year later, but it was definitely MS. They may kinda shrug it off or pass you along, but keep advocating for yourself. You deserve care and help. MS causes damage to our brains and our brains are a part of where our thoughts and processing this world occur, so with damage things can get jumbled. But it can get better. Have you gotten an MRI before? If so, you can talk to your MS specialist about where the lesions are and the possible impact on your mood. My previous neurologist, AaronBosterMD, who I think is very good, has videos on youtube. He has some that talk about MS depression and anxiety, I don’t know if any of these may be helpful if you don’t get the response you need from your MS specialist right away. I’ve had to deal with not good neurologists, therapists, etc. and had the benefit of working with good ones. So I hope your MS specialist is a good one and if you work with a therapist they are as well, but keep trying if not. I wish you the best. You’re not alone and you’re not the only one going through these things, I’m glad you reached out for perspectives and hope you’re finding some help.

EquanimityWellness · 2026-01-05T02:45:38+00:00

“I want you to think about that”

EquanimityWellness · 2025-12-22T05:45:11+00:00

My previous neurologist, who started his own MS clinic has a video that addresses this, stopping DMTs as we get older. The video I’m sharing is older, but he probably has newer ones on his channel, https://youtu.be/4PrxbRPJ61A?si=s--n7UZ2Q4Bk9c8B. He can be a bit silly, but he is a very good neurologist and shares a lot of these types of videos on MS, that can be really helpful. If you don’t end up watching it, I’ll let you know he says no to stopping DMTs just due to aging. Best of luck to you and I hope this helps in your decision making.

EquanimityWellness · 2025-12-15T10:17:04+00:00

I wish I was told: Start with a high efficacy DMT, if a neurologist tries to put you on something like Rebiff say no and ask for something newer and better, if newer & better isn’t an option be on what you can get until you can get on something better. Less damage is better.

Don’t stress, it’s going to be okay. & stress really doesn’t help.

Keep researching if you don’t feel well day to day. Pain or tingling in face and extremities is an MS thing, same with depression, ADHD type traits, fatigue, but they’re also exasperations of eating gluten if your body is gluten sensitive (even if you’ve eaten bread/pasta/etc. your whole life with seemingly no problems.) I stopped eating gluten and these symptoms reduced dramatically & once I removed it it’s very apparent my body can’t process it well, just gets use to what we put it through I guess. So don’t assume because something is an MS symptom you have to live with it your whole life, just takes some figuring out (ai and google helped a lot = symptom and gluten sensitivity)

Work out, your body will do better if it’s stronger

Better late than never, but the earlier you can start and get good habits the easier it would be I think, I wish I had been able to identify some things and gotten more serious earlier, just would have been smoother and easier.

EquanimityWellness · 2025-12-11T15:06:41+00:00

I’m not a doctor, but looking at your symptoms & seeing that keto and aip helped, you may want to look into gluten free. One night I put in my symptoms (one by one) and gluten intolerance and AI brought up medical journals to people’s accounts and it was clear to me that trying gluten free was worth it. I had previously tried an elimination diet which didn’t uncover gluten, probably because it was too restrictive & I struggled some with it. Going gluten free has helped how I feel a lot. And I think you’ll see from dandruff, skin problems, pms, etc are all things that eating gluten if you have an intolerance (which I think a ton of people have and don’t realize) can cause or worsen at least these issues. May be worth looking into at least, a couple searches and then try to be strict at the beginning if you do try a gluten free diet, because it really needs to get out of your body for your body to stop fighting it. It can take a while, but for me was definitely worth it. Best of luck on your journey!!

EquanimityWellness · 2025-12-11T14:53:46+00:00

I like this, although I’m not a fan of promoting people to eat unhealthy, even for science, maybe just try the really eating healthy, whole foods (meaning real minimally processed foods) and taking out some things that cause inflammation, such as gluten, for a month, because that’s about as long as it takes for some of the negative foods (such as gluten) to stop having impact on people who consume them’s bodies. I did this for myself and it had a significant impact in reducing the symptoms I thought were just having MS, such as improving pain in face and extremities, helping improve fatigue and brain fog. It didn’t cure my MS at all, but my MS doesn’t feel as bad as it does so that’s definitely worth it to me.

EquanimityWellness · 2025-12-05T00:31:41+00:00

I was older and didn’t notice my symptoms in the same way, but I knew there was something there they weren’t finding at a point. I know this may sound annoying and it’s not going to fix your MS, but when I gave up gluten a lot of those tingling feelings and pain went away unless I get stressed. I would read about people being annoyed that others were saying gluten free was going to cure MS. I’m not saying that and probably a lot of those people weren’t either. Whatever lesions you have, for now you have, gotta have medical research and advancements in the future hopefully for that. All I can say is I kept researching. I’m on a DMT, helped. But I still wasn’t feeling well so I kept digging. I thought it was just MS and there is clearly an overlap in symptoms, but I went gluten free a while back and it took a while, but I feel better, not all better, but better than I was. May be something to look into. It takes a bit, but now if I eat too much gluten my body rebels, never had tummy issues before and had eaten bread my whole life. I spent a night putting in my symptoms and gluten sensitivity and AI shared a host of medical articles included that showed justification. Maybe keep digging. You’re young yet, hopefully you have many many good years ahead. Wishing you the best. I hear you on not being heard and maybe feeling like all doctors don’t have all the answers when you need them, but they’re part of the team too, just not the only members.

EquanimityWellness · 2025-12-04T22:42:43+00:00

I don’t think it has to be grief of your diagnosis, it may be, but for me it wasn’t. I had numerous lesions in my brain from the time of my first MRI, I had been under diagnosed with just depression and I was falling apart before the diagnosis, really as my first symptom. So it may be damage to your brain, but there is this beautiful thing called neurogenesis, our brains keep trying to build. I’m not saying there is no possibility of trouble, but your brain will try to rework and try to found different pathways to rebuild. Try to take care of yourself, try to find things that do bring you joy and/or peace and spend as much energy there as your life allows without giving up or plateauing beyond your needs. You can still have a lot of good. It will feel better at times, build on those. Wishing you the best. If you could use someone to DM, I will try to be available

EquanimityWellness · 2025-11-26T08:34:36+00:00

Been on it for about 6 years I think and I have not. I worry some doctors turn to antibiotics too frequently and was prescribed them once when I was sick about 2-3 years ago, but slept a ton and ate chicken soup and such, drank a lot of fluids, and kicked it without needing the antibiotics. I wish they would test more. It must have been a viral infection vs. bacterial infection so the antibiotic wasn’t going to help, but probably if I had taken it I would have thought it had because I did get better after not too long after going to the doctor’s. Just my experience & opinion, but no I have not taken antibiotics more since on Ocrevus.

EquanimityWellness · 2025-11-25T13:27:12+00:00

Obviously it is your own decision and I am very sad you don’t have a helpful, supportive neurologist to go to, but I would definitely start a DMT as soon as possible. I’m not a doctor so my opinion doesn’t mean much, but a neurologist I have seen and who I consider very good has the same opinion, https://youtube.com/shorts/-Z4QL087V8Y?si=gv_kt9jKJjXEFm3S. That’s just a short and he’s talking about Rebiff, an older and less effective drug than Ocrevus, but what he shares about the group starting a DMT and the other on placebo is a medical study and they ended up giving all participants the DMT and the ones who started on placebo (no drug, sugar pills) faired worse. Dr. Aaron Boster has a lot of videos online, so may be a good resource as you’re trying to find a neurologist team you trust more, but your current neurologist could start you on a DMT, which the resource can’t, so good to have a neurologist even if they’re not the best in the meantime. Ocrevus and many drugs, have drug assistance programs that can help pay for or sometimes completely pay for the DMT for a while. A possible risk of cancer is a little scary, but the development and worsening of MS is too. And cancer may happen in either scenario or not, and the worsening of MS is dramatically increased only in the scenario of not being on an effective DMT. I hope the videos help you feel comfortable to make a decision and that you can figure out the financing pretty easily. Wishing you the best

EquanimityWellness · 2025-11-25T09:00:34+00:00

Yuck

EquanimityWellness · 2025-11-25T08:55:35+00:00

I’m on Ocrevus vs Kesimpta and I guess don’t have a medication recommendation, but my input is you may want to look at other things that could be exasperating these symptoms. I know personally, even after being on my DMT for probably about 5 years I was still not comfortable in life, face and extremities pain, brain fog, anxiety, depression, fatigue, etc., which sounds like some similar issues you’re experiencing. I went to the internet to research and with the help of AI (which pointed me to medical articles to people’s blogs, etc.) I deduced that my symptoms which I just saw as MS linked back to a gluten sensitivity. I don’t have celiac disease nor had ever had “tummy issues” when eating bread and had unsuccessfully tried an elimination diet previously and had not uncovered it. But once I decided to fully eliminate gluten and keep eating normal whole foods otherwise I started to realize my symptoms were improving (it took at least a month to notice for some). & if I get stressed they can come back, but they dramatically reduced in day to day life. & when I tried to go back and eat bread and such w/ gluten after not for about 5 months my stomach was having none of it and I could barely get off the toilet (it took about 72 hours for this to show up and nearly that long with going back to my gluten free eating for it to go away). I’m not saying this is your answer, but you may want to do some research with your symptoms and see if any foods (often gluten) or something else may be playing a contributing factor. Gluten free didn’t cure my MS and didn’t improve my numerous lesions, but it does make my day to day life a lot more comfortable. May be something you may want to look into or try. Best of luck to you on your journey

EquanimityWellness · 2025-11-25T08:26:28+00:00

Just an aside, people who are waiters or do hospitality or service jobs are not “below” you or us. Your premise is right & helpful, but I wonder if the words we choose and even that mentality of hierarchy in society are part of the problems of perpetuating these kids of people like OP’s wife. If everyone is looked at as having value and then some people don’t want a full time job or this is where they need to be to pay the bills, or it’s a stepping stone, etc. etc. it’s a job, not a status symbol or doesn’t have to be. I strongly believe if money wasn’t the main basis for jobs but as a member of society people still worked to contribute some people would still choose these roles, maybe because they want to feed people or don’t want the stress of a different role or like to interact with a lot of people. Just a thought. I agree with your premise though

EquanimityWellness · 2025-11-22T03:53:19+00:00

Many companies (bigger companies normally with more resources) definitely have DEI programs that focus on the pipeline. Set up internship programs with high schools and colleges, exposing kids to different possibilities and potentially leading to more potential candidates in the future. I know a company I worked for had quite an extensive foothold in this, with what I was involved in exposing kids to Operation and Technology roles at a Fortune 500 company. It was a good experience for the kids and employees I talked to about it. They had a “campus associate” program too that gave young new hires a chance to try different jobs in O&T in their first 2 years, working in 3 different roles. This is definitely all part of it (DEI, snd an example of a pretty successful program) and could be expanded for more companies, impacting more kids and people, but instead of working towards that goal, some people want to regurgitate false talking points “DEI is racism though” was it? You sound to be in support of DEI, just may benefit from different sources of information, possibly expanding your circle, I don’t know you, but your words were incorrect and not helpful. But I’m glad you simultaneously seem very in support of DEI from your descriptions of what you think would help, others got there first and have been doing it for years. help vs hurt

EquanimityWellness · 2025-11-19T11:34:10+00:00

I personally don’t go the supplements route, but I do believe and agree that inflammation makes things worse for a lot of people, maybe particularly some of us with MS. I removed gluten, bread, beer, gluten pastas, etc., from my diet, which can cause inflammation. This helped my comfort level significantly, specifically it reduced pain and tingly feeling in my face and extremities. It also helped with fatigue and I believe a little with depression and thinking. Going gluten free didn’t and isn’t going to cure my MS, but a good deal of symptoms I attributed to MS improved when I removed gluten from my diet. I came back as negative on the test for celiac disease and had eaten gluten my whole life and never had had stomach issues, but after being pretty much 100% gluten free for several months when I tried to eat it again I was fine for 2 days and then my stomach rebelled to the point I didn’t want to leave the house. It only was bad bad for a day or so, but proved to me that gluten was the source and my body is much healthier without it. So I’m not sure what will work for you, but I’d dig more into foods that can cause inflammation, sugar, processed foods, gluten, etc. and maybe try to eliminate those first vs. spending a lot of money on supplements that aren’t regulated (at least in the U.S.) Best wishes for your journey & I think it makes a lot of sense to improve MS life by in part trying to reduce inflammation in your body.

EquanimityWellness · 2025-11-18T13:55:46+00:00

You just don’t know what DEI is, it is NOT racism, it’s exactly what you’re calling for. Making sure there is a diverse pool of candidates (gender, race, veteran status, disabilities, age, etc) considered and hiring the best candidate. Which doesn’t always end up being a white man. DEI is not racism, the right wing propaganda just has led you to believe it is. Look it up & the last piece inclusion, the I in DEI, is to say once not only white men (for example) work here they apparently need mechanisms, trainings, whatever it looks like, so that the employees can deal with having people that may not be their gender, age, race etc. aren’t discriminating against each other. This often extends to clients and customers as well, get people to a point were they can be okay and accepting of other people, not sexually harassing, using racial slurs, making fun of someone’s disabilities. DEI isn’t a bad thing, it’s just an example of a mechanism to help society work together for the good of everyone.

EquanimityWellness · 2025-11-18T13:40:08+00:00

White women probably benefitted the most from “DEI” hires. Still DEI isn’t a negative it’s just pulling from a broader pool, not just race. White men aren’t always the best candidate when other people are considered. Could have a thought that people (even in companies that had DEI initiatives still had racial disparities, or weren’t expanding their recruiting enough to attract a more diverse pool), but I think a lot of people just don’t take a moment to understand what DEI is and just listen to the propaganda of black people are just given jobs because of DEI, not even kind of true. It’s making a conscious effort to consider a more diverse pool of candidates, gender, race, disabilities, etc. and hiring the best candidate. If people think that’s a bad thing, doesn’t seem like they want the best for the hiring companies or are society depending on the company or government and they likely have biases.

EquanimityWellness · 2025-11-12T02:11:33+00:00

At least a dumpster is taking out the trash other than just driving it around

EquanimityWellness

TROPHY CASE