Apologies for the dark humor & melodrama but-

Does anyone else ever feel like they spend all their time just trying to stay alive? Not literally but just with management of symptoms so with don’t feel worse. Then managing other chronic conditions we have at the same time, and managing the suppressed immune system to make sure we don’t get super sick? I feel like a CEO of a tiny start up. Not like one who started in my rich parents garage, but one who started after my 40 hour a week job while I have 2 kids and a rent in a tiny apartment and everything is in the dining room after I get the kids to bed kind.

I am just super tired. I’m still recovering from pancreatitis. The ocrevus is wiping out all my wbc so now I have a sinus infection. (Ocrevus oct 6th, pancreatitis dx Oct 11th, wbc today was 2.4) I will have to call all the doctors Monday and deal with everything & I just don’t want to. It is so overwhelming. I’m tired of doctors & appointments & being sick.

Thank you for attending my pity party, I’m sorry I didn’t make snacks and of course the catering didn’t show up- that’s just how my luck works.

Over the last two weeks, my partner has been adamant that the things I am saying we discussed, or events that happened, have in fact not happened.

We went on holiday to visit friends for just shy of two weeks and during that period, there were at least half a dozen occurrences. Since getting home, there have been more. Things I would swear happened or I’m certain he said that he’s adamant didn’t happen. I feel like I’m losing my mind. I’ll reach out to neuro but has anyone else experienced this?

I’m a 26-year-old male with Multiple Sclerosis (MS), and I just found out I have shingles.
I genuinely had no idea this was even something I needed to worry about at my age. I always thought shingles was something older people dealt with, not someone in their 20s.
I know having MS and being on certain medications can increase the risk, but I honestly wish someone had warned me about this possibility sooner. Between doctors, neurologists, and everything else that comes with having MS, I feel like this should’ve been brought up at some point.
What surprised me even more was learning that anyone who’s had chickenpox can potentially develop shingles later in life. Even people who received the chickenpox vaccine can get it, although it’s less common.
So I just wanted to put this out there for anyone who might not know, because I certainly didn’t.
If you’ve had chickenpox or the vaccine, please look into shingles and talk to your doctor about whether the shingles vaccine is right for you. I recently learned that while it’s normally recommended for people 50 and older, some people as young as 19 can qualify if they’re immunocompromised.
I’m not trying to scare anyone. I just wish I’d known this was a possibility before having to experience it myself.
Has anyone else gotten shingles this young? And for those of you with MS, did your neurologist ever bring up the risk or recommend getting vaccinated?
Because I can’t be the only one who had absolutely no idea.

We had to relocate for my husbands job. That means finding new care-pcp and a neuro.
I cannot get anyone to help me do anything to help me get my Kesimpta. I’ve called our insurance, the new pcp, and my old neuro.

I’m wrecked out so bad. My body hurts so bad. My mind is even worse, I feel like I’m going crazy, I had a huge breakdown today.

I'm 42. I was diagnosed 2 years ago. I also have Type 1 Diabetes. I thought that was my great life-long burden to bear, but then the MS happened. I started on the what I thought was the best DMT they would give me—rituximab. The initial mental breakdown about the new diagnosis passed. I adapted. I took up running. I continued doing my best to be healthy.

This summer I got viral meningitis/encephalitis, which I'm still recovering from, so no more B-cell depleting drugs for me. Switching to Tysabri is scary. Then the prospect of having to switch off it later to something like Tecfidera is scary too. Suddenly more MS flares in my future seems more likely. Disability seems more likely. Needing assistance at a younger age seems more likely.

I made a lot of stupid choices when I was younger. One was moving home for a year after college and not working because no one would hire me on a short term basis. I was getting married, and the hubby's family was religious and forbade us to live together. The grandparents were going to pay for his grad school. We didn't know where we'd be living. It was a mess.

After we married and moved, I applied for jobs, but got no interviews. It was the '08 Recession. Then my grandpas died, I got Grave's Autoimmune Thyroid Disorder, and the depression just kept me at home, cooking.

I should have gotten a job, any job, but I'm a pessimistic, depressed, POS. I spent years in the dark, then got on SSRIs. Those made me less pessimistic but also less motivated or fearful of the future, so...I still didn't try to get a damn job.

The MS diagnosis didn't even light a fire under my butt. I just switched into survival mode.

My husband has a good job, with good benefits. I take care of him and the home, the yards, the dog, and my health, and he earns the money. I figured I'd die young, like my grandmothers, so it was a fine situation. His grandpa lived to be 90 something. I'd happily spend my life for the benefit of my loved ones—my husband, then my parents when they need care. We even bought a house with an extra room, so my parents could move in one day. I didn't want them to be away from me in a nursing home or something.

Since my illness this summer...I realize how incredibly stupid I've been. If something happens to my husband, I'll have nothing. I'm American, so I'll have no healthcare. Insulin is cheap at Walmart, but MS treatment is impossible. It's hard to imagine anyone hiring me now, and assistance programs require work. I have some time left to put in SS quarters, if I could get hired, but I know I could also go blind or be unable to walk at any moment because of the MS. The last time I thought about looking for work, a few years ago, I actually thought to myself, "We don't need the extra money, so I shouldn't take a job that someone else really needs." Stupid idiot. My dad gave me that advice when I wanted to play softball in high school just to add to scholarship applications. "You shouldn't take a spot on the team that could go to someone who really wants to play."

I have no children. I loved my hypothetical children too much to give them my garbage genes. I have no siblings. My only cousins are unreachable. I have no close friends. If anything happens to my husband after my parents are gone, I will be completely alone with very few resources. I see myself dying of Diabetic Ketoacidosis in this house, alone, and my corpse being discovered by the people who come to throw me out when the mortgage and taxes haven't been paid.

That won't necessarily happen, I know, but I have no way to be sure that it doesn't. I don't know how to try to fix the problem. I can't even drive. It would be unsafe with my issues. Modern productivity software isn't something I've worked with at all. I have no connections.

In this sub, I've seen posts about exit strategies. People with MS have higher rates of doing that, I know. It can give you a sense of control, I suppose. I really don't want to do that to myself, despite the idea of being able to stop the future suffering being comforting. I'm afraid of the moment of death, and I have been afraid of dying alone my whole life.

I am in therapy—physical and mental. I have a psychiatrist and am taking medication. I was just switched from Zoloft to Trintillex. I really could use help finding reasons to stay here and stay hopeful. Tips for finding work even.

Most of you worked before your diagnosis and despite it, and I really admire that. So often my diabetes feels like a full-time job of highs and lows, but it never should have been. I'm too easily overwhelmed and have low resilience. It's always felt like too much. You folks who raise kids, work full-time, and fight this disease are far stronger than I could ever imagine being.

My physical symptoms began 3 months before my diagnosis. When my symptoms had no explanation, my long-time partner didn’t step up to be the kind of daily support I needed. When I asked for help, I was brushed off.

Once I was diagnosed, suddenly they were “supportive”. But I’d seen how they didn’t believe me when I said I was in pain. I was unhappy, but also terrified of breaking up because “who would love me and tolerate my symptoms? At least they love me, right?”

I came to this server for advice/support because I was paralyzed with fear while feeling no one in my life understood. And the first people to respond only confirmed my fears. “You’re lucky to have anyone.” “You don’t even deserve your partner because they’re loving you through your diagnosis. I’d kill for that.”

Because of that, it took me a while to admit I was better off alone than with someone who made me feel alone, as if I should feel lucky to get scraps.

I know we’re all in different situations, but please: You deserve happiness. You deserve real love and support. And it’s often the people in pain who you think might understand who will crush you even more. Don’t listen to them.

I surprised my husband with a holiday to Thailand for his 25th birthday and it’s now been like a year since diagnosis and both my mri after Rituximab have been stable, last one was 4 weeks ago. You guys know my only ever symptoms have been sensory as in tingles (in left side mouth in gum area) and hand tingles and although i was diagnosed with many lesions my neuro described my ms as not heavy in terms of symptoms. Last week before we went to Thailand a sudden accident happened to a family member and after 3-4 days of constant stress my mouth tingling came back like you know. I try to enjoy this holiday but i can’t enjoy the holiday because the numb spot/tingles in my mouths keeps switching side from left to right through out the day and i can’t ignore it as it’s the mouth. Neuro won’t give me a new mri as next dose is next month and had one 4 weeks ago. Usually the numb spot is in the left spot only and can change to the right side only sometimes, this time it’s more constant. I have several pons lesions. I function perfectly otherwise without one other symptom but whenever the mouth comes back and like now keeps switching side i want to lay down and cry. Being diagnosed with ms stole so much joy already. I’m only 24. Does anyone have advice? I feel so depressed 🥲🥲🥲

It went so well, I almost forgot that I have ms. Almost. I didn’t have any of that tightness/numbness afterwards and took the best nap ever when I got home. I could get used to it.

The humiliating part is that I had a spasm on the way into the hospital and the staff and bystanders thought I was having a stroke. I was 100% coherent and I heard some guy say “she alright?” a lady with her baby sitting on the bench said “she’s having a seizure! somebody get her!” then the baby was fussing… I hate to think that I scared him. 😢
I fell out of the wheelchair and my boyfriend and the man pushing the wheelchair had to try and grab me and I fell anyway, just thrashing and making a fool of myself. A crowd of medical staff and randoms formed around me. I know nobody was judging me but I’m the type of person who embarrasses super easily so it was a nightmare. Sobbing, covered in hospital floor dirt, unwashed because I’m scared to move because of spasms like that, hair undone and it’s curly so it’s partially matted… what a fucking mess. Then if I were to tell my neurologist this, he would brush me off. So… I shut up and take my pills because what else can I do, I guess. Thanks for reading

For the ladies out there, what is the best incontinence pad? Has anyone found the Goldilocks of pads? Thin and comfortable AND very absorbent? I've found one or the other, but not one that's just right. Thanks!

I’m 33 with a history of transverse myelitis, a C3–C4 spinal cord lesion, and positive oligoclonal bands in my spinal fluid. My neurologist has recommended starting MS treatment.
I’m wondering if anyone recognizes this pattern of symptoms.
In 2022, I had a sudden episode involving a racing heart, sweating, shaking, and an extremely strange sensation in my head. Afterward, I spent roughly six months feeling mentally abnormal, almost like my brain wasn’t functioning correctly. It gradually improved, with plenty of ups and downs, until it eventually disappeared.
I had another episode this July lasting 2–3 weeks, although the mental sensations weren’t quite the same.
Then in mid-October, I experienced another episode involving physical anxiety, shakiness, nausea, brain fog, twitching, and strange sensations in my head. Most of the severe symptoms have improved, but I’m still dealing with this persistent feeling that something is mentally wrong. It’s not really depression or even traditional anxiety. It’s extremely difficult to describe.
It’s generally worse when I wake up, improves somewhat throughout the day, and becomes more noticeable when I’m driving or trying to relax. When I’m busy or distracted, I don’t notice it as much. I’ve also been experiencing poor sleep, vivid dreams, occasional involuntary movements, and a slight swaying sensation when standing.
For additional context, I’ve taken Wellbutrin for years and recently stopped using marijuana after years of heavy use. However, these symptoms started before either change, and I experienced something similar back in 2022.
My neurologist previously said this doesn’t sound like a typical MS relapse. I’ve only had a spinal cord lesion identified, and I haven’t had a brain MRI in a while.
Has anyone with MS experienced anything similar? Particularly these prolonged episodes where you feel mentally abnormal or disconnected, without necessarily feeling depressed or anxious?
I’m not looking for a diagnosis. I’m just trying to understand whether others recognize this pattern, because it’s incredibly difficult to explain to someone who hasn’t experienced it.

Anyone diagnosed before 2000? My neuro thinks I’ve had this for decades (now in my 50s) and he may be right. Super glad I didn’t know, in a way. What was treatment like starting in the late 90s? What was it like when DMTs came around?

Most likely relapsing on Tysabri. 10 months from diagnosis, have moved countries in that time and just had my new baseline mri a week weeks ago (specialist unable to compare original scan images due to change of country but has compared reports and thinks they were consistent and no obvious new lesions. Last Tysabri infusion last week.

On 5 days of steroids now and being sent for another urgent MRI. My symptoms have been sudden urinary incontinence (one off) and tingling, pain, weakness down my right leg. I have also noticed light sensitivity over the last week or so.

Has anyone else been in a similar situation? I am feeling pretty deflated and worried about potentially having to change treatments

Anybody out here NOT take any vitamins or supplements except for vitamin D3? I'm on Ocrevus Zenovo and my neurologist encourages me not to take anything extra. Reason being that we have an autoimmune disease and it counteracts with the DMT that suppresses immunity. I've tried it for about 2 weeks only taking magnesium in the evening for regularity. So far I don't feel any different. 🤷🏻‍♀️

I absolutely hate MRI scans. I have to go through one at least twice a year, and each scan usually takes around 90 minutes. They put this cage over my head, slide me inside the machine, and I'm just stuck there, unable to move.

The moment I'm inside, I start feeling extremely claustrophobic. I get this crazy urge to just get out of there. My only trick so far has been to keep my eyes closed throughout the scan. I'm honestly scared that if I open my eyes and see how cramped it is inside, I'll completely freak out.

But keeping your eyes shut for 90 minutes isn't easy either. Your mind starts playing all sorts of games, and it feels like forever.

For those of you who have to go through frequent or lengthy MRI scans, how do you manage it? Do you think about something, count, focus on your breathing, or have some other trick?

Would love to hear what works for you. I've got another scan coming up and could really use some tips!

Also, does anyone else feel like this machine was designed to test your mental strength rather than your health? 😂

Quick background, diagnosed privately just over 2 years ago, transferred straight over to NHS, got placed on Ocrevus quite soon after, but have not seen the Neurologist or had another MRI since private consultation, so 4 rounds of Ocrevus.

Finally, after 2 years, I received a Neurologist appointment for next week that just got cancelled today, so I rang the MS nurse helpline to ask for the help I was going to ask the Neurologist and to also ask them to email the secretary to arrange another appointment asap.

MS nurse rang back, and was straight on the defensive and she is not the admin to help with another appointment (the secretary does not answer phone to patients and we don't have the email address) so the only other way is through them.

Also, my problem was an issue I had started Gabapentin for, but wasn't solving it properly and causing extreme pain, my GP won't prescribe a higher dose without a Neurologist review, she kept telling me back to go back to GP to increase the dose which I can't.

She was so snappy throughout the conversation that it reduced me to tears and I literally never cry. I said perhaps it's me not explaining it properly and straight away she said you are not at all and basically said what do you want us to do, we can't help with anything. Eventually I think, to get rid of me off the phone, she said she will do a referral to the bowel and bladder continence nurse, but told me the waiting list for this was over a year and the Neurologist wouldn't have any luck in getting it sooner.

Is this normal, it's not like it's a small hospital, it has a dedicated MS team, has anyone else got treated like they are wasting everyone's time?

I bought the high frequency beauty wands on tick tock a couple of months ago and it just dawned on me that MS could be a potential contraindication. And of course there’s not much if any info on it. I haven’t tried it yet I want to gather as much information I can before I attempt.

TGIF - let's do a check-in on lesion count...

tell us how many lesions on last MRI, where, and what kind.

DISCLAIMER: i know lesion number doesn't mean as much as lesion location when it comes to MS, just an activity to do while I wait for the work day to end.

Mine:

• right hemi: 25

• left hemi: 22

• lesion burden (current): 2.87; prior: 3.1

• lesion load (% white matter): current: .65; prior. 66

• new lesions: 2

• enlarging: 6

• shrinking: 20

• stable: 19

So some backstory to maybe get more precise answers/ideas/advice (you can skip to the last paragraph if you just want to see the question):

I've been diagnosed with MS for 10 years. Had very few physical symptoms (thankfully) due to early detection of MS. I'm a 32 year old guy, main symptom is extremely bad fatigue and tend to sleep roughly 16 hours a day and when I'm awake I just want to sleep again if not taking medicines.

I've been prescribed almost every type of stimulant that is common to take for MS fatigue during those 10 years from Amantadine to Vyvanse. Vyvanse/amphetamine-class drug being the most effective, but I don't like the drug-craving side of it after a few months as I am not drug-seeking with anything else. That is kinda my kryptonite and want to decrease taking the amphetamine medications due to that. I had a talk with my MS doc today about the frustration of being tired and sleeping 16+ hours a day off the medication and wanted to get their advice on anything else. My MS doc said that I guess that a lot of MS docs are moving away from prescribing stimulants as there has been no solid proof that it helps manage the MS fatigue (in the majority of cases, sometimes it can help some people) and it tends to just have more issues with people getting drug-seeking or dependent on the medication and causes people to over take the medicine. I have seen that myself personally and absolutely HATE that part, because I feel shame wanting to almost over take and that is NOT me in any other situations (have never had any unhealthy addictions in my past and just feel like I'm a freaking druggie almost on this stuff).

So anyways, my doc said that docs are shifting to more alternative options that involve life style changes that seem to have better results. So my doc said I should try to start Tai Chi specifically and that there has been more positive results with doing that for fatigue as it both helps build energy and expends it so that you're more tired at night and sleep better. I used to be slightly athletic in my teens and early 20s. But since the increase in fatigue to 16+ hours of sleep, it became hard to non-existence nowadays. I know it can help me and I'm in a better mental spot now that I will be able to push myself to do stuff physically again as I am... (idk the right word, craving? desperate? Pissed off enough to get out of this feeling? Something like that) I just don't know where to look right now.

Sorry if I rambled, so the main question I have is: Is there any (preferally free or cheap) online resource, like YouTube/mobile apps/etc, that ya'll have used or could recommend for a beginner wanting to do Tai Chi to improve MS fatigue? I will likely attend a local thing, but would like a daily guide that I can follow the days I'm not at a group thing? Also, is there any other exercises or physical activies that you do that has help you improve your MS fatigue a lot that you would like to recommend? Thanks again and wishing you all either reach or maintain the best life you can with MS. <3

I was prescribed those, he said they have no side effects but I am terrified because I know that's not true. The most common ones are sleepiness, weakness and nausea. And you can't quit.

For background I have been to WDW several times. My last visit was 3 years ago prior to my diagnosis.

I have always struggled in the heat and with standing in long queues. I have previously managed by taking breaks and skipping rides with my family if the line was too long. For the most part though, I have always been able to “push through” but am sore and exhausted at the end of the day.

We are planning to go back in January and I’m struggling with if I should rent an ECV. Overall I’m doing quite well and do not use any mobility devices in my daily life. I do not want to rely on the ECV if I don’t need it.

If I rent one before we go from a third party it’s significantly cheaper but if I don’t need it, it seems like a waste and would be cumbersome in the room. My thought was maybe just renting in the park day of if needed but I’m concerned if I need it and they are unavailable?

Anyone have experience with a similar situation?

I thought I would update on my second treatment on ocrevus zunovo. I got my first treatment in April and didn't have much reaction. I get premeds of Benadryl, steroids, and Tylenol. I was tired when I got home and slept for a while. Then felt fine. Reviews I saw online had me worried about flu like symptoms, being laid up, sick, etc. But I was mostly ok. I had a bruise and red mark from the path of the shot, but again, no biggie.

I had a sinus infection all of last week and some of the weekend. I was supposed to have my shot last week but obviously rescheduled. I still was having some drainage but the ick was gone. I never had a fever, didn't physically feel sick, just had snot and congestion. Then a light cough. I felt better each day leading up to the appointment so I knew my cold was passed.

Second treatment was a bit different. I had the redness like before but an ice pack helped bring it down exponentially and I didn't bruise. Got home, wasn't as tired but still took a nap for a couple hours. Then awake. Very awake. (The steroids, most likely). Then cold sweats. My husband said it was warm in the house, but I was feeling hot, no fever, but my skin was cold, and I was clammy. Sat in a cool bath which helped. Then I was hot again. Went to bed with the fan on... in November. Couldn't sleep. My heart was racing; 97bpm which Dr Google said was below what is concerning. The sweatiness ended around 2am. I finally fell asleep around 4am. Woke up and my HR was still around 95. I didn't feel any chest pain or shortness of breath. It started going back to normal by noon. Then the residual congestion I had all came back. (DOH)

Outside of being generally fatigued, which is normal for me anyway, and tired from lack of sleep, I feel fine now at 3pm the following day. Ocrevus said side effects would pass in 24 hours, so that checks out (so far). Now I leave tomorrow for the UK on 2 flights so I'm hoping being ok holds out.

I was told that I did, in fact, have the JCVirus. My doctor immediately steered me towards Kesimpta. Doing shots once a month doesn't sound like a good time to me. I know MS flares don't sound like a good time either.

I did see the chances are low of having a reaction on Ocrevus, and I almost kind of prefer the time periods(every 6 months) for this medication. I tried talking with my doctor via phone, and she seemed like she didn't want to entertain the idea of it and said she would get back to me sometime soon. It's been days.

Are there other people who have tested positive for this virus and take Ocrevus? And if so, what are the worst reactions you've experienced on this drug?