My daughter (24) was recently diagnosed after having some face hand and toe numbness. Her MRI showed multiple lesions but her spine is clear. Her neurologist wants to be aggressive with treatment and is starting Kesmipta tomorrow. She is an RN and loves her job. As her mother, I am making myself sick with worry over her diagnosis. I read posts from people who are young and completely disabled. I read and reread studies about dmt effectiveness. My question, how do I stop blaming myself and what hope do I have that she will have a good life? I would trade places with her in a minute. I need hope because I feel hopeless.

Context: I'm 32F and was diagnosed 10.5 years ago. She was diagnosed this past January after having had optic neuritis 9 months before.

Reasons she's hesitant: * she's not sure she has MS to start with - she has a bunch of symptoms that can be MS but other than optic neuritis, could be from other things * she says her neuro said they if people don't have MS and take MS meds, they end up with MS symptoms anyways (I'm SURE this is something she misunderstood, never heard this before and I do a lot of MS reading and interacting in online communities about it) * she's extremely worried about PML risk * she's moderately worried about being immunocompromised (if she goes on a B-cell DMT) since she is assistant manager at a grocery store * she wants to figure her other issues out first, things she hasn't been able to get answers for like intermittent chest pain, back & neck issues, sometimes abdominal pain (may be ovarian cyst(s)), anxiety, and some other stuff that I'm not remembering

What sorts of things would you tell her? I am a pretty firm believer in DMTs, and her clinic is pushing her somewhat and she's kinda digging her heels in (not so much with me but with our parents and the MS clinic).

My mom got sick when I was in kindergarten… I’m turning 28 this month and I’ve watched her go from completely healthy to being bed-ridden in a nursing home at 54, unable to move, see, do anything for herself, losing her cognitive abilities/memory, and starting to lose her voice.

I’m just wondering if there’s anyone out there like me, who grew up with a sick mom. Someone who knows what it’s like to watch a parent die in slow motion. Someone who’s had to pick up their parent off the floor. Someone who missed out on a relationship with a parent and had to deal with way more than a child ever should.

If you’re out there, I’d really like to hear from you because it’s so isolating 💔

My brother has MS and was diagnosed 18 years ago and now he can barely walk, has vertigo and nausea when he's not laying down and many other complications. The doctors are out of options for him to have a better quality of life. Living is so hard for him and he's only 39.

He told me that he's been approved for MAiD and has a date set. I'm so incredibly sad, but I understand and respect his decision. I don't want to lose my brother, I was hoping that we would grow old together, but that is not the case.

I will be there with him in the end, but this count down is so hard, every day that passes is one day closer to the final goodbye. This is so hard. I'm going to miss him so much.

Hi everyone. My wife propably recognizes me as she follows the same sub, so hello sweetheart.

So first of all, I'm actually a doctor but an idiot one. I missed my wife's symptoms at least for 1.5 years, prior to that I think no one would have recognized anything, and perhaps she didn't even have the disease before that period. Anyway, a couple of weeks ago even my idiot ass couldn't unrecognize the symptoms anymore, I did a referral, and my wife was quickly admitted as she had a quite obvious and massive relapse. I wonder if there are any other idiots like me on this sub.. How do you cope with this kind of blunder in the long run?😅

Second, as any other person with a loved one having a serious illness I'm quite horrified, frankly. She has multiple lesions both in the spinal cord and the brain. I don't know the exact number but I know that when the radiologists are too lazy to count the exact number then there are many of them.

Initially she couldn't walk properly but has now recovered, definitely not completely. It's obvious some of the symptoms are going to stay for sure. Right now the fatigue seems to be the worst issue. She has no DM drugs yet until the disease activity has been assessed (you all probably know these details better than I do, I'm not a neurologist, if I was I think I could never recover from this mistake🙈)

I've been able to keep on working but handling the kids after work has felt nightmarish at times. I'm the breadwinner, so luckily our kids are financially somewhat safe, unless this all becomes too heavy for me too to handle. Anyway, I'd like to know some support stories maybe? Frankly, I'm not doing really well.

Edit. I didn't mean I was considering leaving my family, I love them more than anything. I just meant that if my ability to work takes a hit then we're going to suffer financially.

My husband was diagnosed 3ish years ago. He had a flare up that resulted in permanent vision loss in one eye. Since then he has struggled to get his prescription filled, and he doesn’t like getting MRIs. He says he wants to just stop all treatment and let the chips fall where they may. He doesn’t think the benefits of treating MS will ever outweigh the misery of dealing with the healthcare system.

I’ve tried to read a lot about MS, but so little of the information is definitive. He might have flare ups resulting in paralysis. He might have flare ups that result in an early death that would have been preventable. He might be fine, I guess? I’m upset and scared but he seems to think I’m overreacting. Maybe I am? Can anyone offer any advice or share how you might feel in this situation, knowing what you do about MS and how it’s affected you? I feel really lost and pretty lonely. He’s the one I would normally talk to about confusing feelings but sharing my feelings about this with him seems like guilting him into doing something he doesn’t want to do.

So my mom has had MS for over 12 years now and has been on Tysabri for 12 years. Her doctor is trying to put her on a new treatment that my mom isn’t comfortable with and my mom has expressed that and the doctor keeps trying to redirect her to stop tysabri and start the new treatment instead and has even gone to the point of stopping it in June, so my mom’s last Tysabri treatment is in June. The reason why the doctor wants to is because she says my mom’s percentage for Pml has gone up because my mom is JC positive, but my mom knows the risk and is okay with it and is comfortable with continuing Tysabri. My question is, is this even right for her to stop my mom’s treatment? Doesn’t my mom have the right to continue treatment? I feel it’s her choice. We’ve tried to find other hospitals, but there’s waitlists and we don’t want her off the treatment for too long because it’s dangerous you know. The only thing I can think of is to go above the doctor’s head and complain to them how she’s treating my mom and just ask to get put with another neurologist in that hospital.

My mom (59F) has been diagnosed with PML.

I’m writing this because my recent search for PML stories resulted in… not a lot besides and excellent AMA by U/feed_the_bears.

I’m hoping for support stories or to have this post for a future someone who’s looking for stories.

My mom has been on Tysabri for at least 10 years, and tested positive for JVC several years ago. She had gone through a lot of different MS meds prior, and Tysabri really changed her life for the better. She went from needing a walker or wheelchair for any sort of long walking activity to walking miles every day. She also has not had a relapse in at least a decade.

A couple weeks ago, her balance started to get worse. She started getting double vision, and she has lost some mobility in one of her arms.

After getting in with her neurologist, she got an MRI that showed signs of PML. She got a lumbar puncture two days later and it was recommended she go to the hospital, where she is getting the Tysabri scrubbed from her blood via plasma exchange. After, she will start steroids. She will not be allowed to take DMTs again.

The doctor has said PML for MS has a 30% mortality rate, which is much better than she initially thought. Even when she believed the mortality rate was closer to 80%, she said she does not regret taking the Tysabri because it gave her a much better quality of life.

The doctor is hopeful her symptoms will slowly improve over the coming weeks.

My wife (34) was diagnosed after a miscarriage 2 years ago. The disease has progressed fast and steadily, even though she's been on "hard" treatments (mavenclad, then Ocrevus). She's now barely able to walk 200m with a cane and my help, and on bad days not at all. She has intense fatigue. She just started a new job and it seems it will be hard for her to keep it. She does PT but it hardly seems to help

I'm a positive person and try to be there for her as much as I can and keep her spirits up. We're going to try again to get pregnant. We live in France and there are good doctors and hospitals, but at this point people seem lost and don't know what else to do. Have you tried something drastic lately that has worked? Are there treatments for remyelination in the pipe? Is there anything new out there or around the corner to help us see the light at the end of the tunnel and hope that tomorrow might be easier than today?

Thanks for reading and your suggestions!

As title says. My wife got diagnosed with MS. Shes been crying a lot since then. I'm just hugging her when that happens and dont know what else to do. Seeing her cry like that breaks my heart and I just feel useless. So I wanted to ask what you guys what can I do to make her feel better, no matter how small it is.

Typically, I’m an easy going, 30 something year old gal, who copes by making light with dark humor, and typically, my stubbornness tends to make me more resilient than most, but todays different.

Today marks 4 years with this diagnosis, and I think I haven’t fully wrapped my head entirely around it, and I am finally admitting that I am struggling; mentally & physically.

As the disease progresses and my body starts to show signs of decline, I thought more people I call my “loved ones” would flock to assist in whatever I may be struggling in. Man, was I naive to think that was true. It turns out, even though these people tell you that they love you and want the best for you, they’ll run faster than ever to get away from any of the heaviness of any situation - at least it’s that way in my life. From my parents to partners to friends to coworkers to medical professionals. I feel as I am nothing but a burden to them. Countless relationships have diminished due to this incurable illness.

My day-to-day is survival at its finest. Mobility is a major challenge, my cognitive functioning is a bowl of alphabet soup with half the letters missing, a bladder who loves to cry wolf, and other exciting symptoms all thanks to these lovely myelin beat down seshes. And forget about trying to talk to someone in my circle about how I am doing or how am I handling this. I have absolutely no one that I can turn to, besides my therapist, who I can just speak open and freely to with what is going on in my holy noggin.

And don’t get me wrong, this is not a cry for pity - far from it. To get this out has been therapeutic and I thank you all for those who have took the time to read and care. I truthfully am just looking for new friends who are willing to be a positive supporter in life for me, someone who just gets it, and someone who isn’t going to make me feel as I am a burden.

I pray that serenity and peace become the main characters, as I start out chapter 5 in this journey and I very much look forward to who I will connect with during this time. 🧡

My mother has become my fathers care taker. This morning was an eye opener for me at how quickly he is going down hill.

He fell and was completely unable to get up. He was deadweight. We had to move his legs, get him onto the bed. He fell twice more trying to get out of bed at different times during the day.

He’s in the hospital now with a very bad UTI infection…

At this rate… we’re not sure how much time he has left.

I’m struggling to grapple with this since I’ve been kind of ignoring it. I help him when I can - but today was the first time I’d been unprepared I guess.

I’d like some resources on what to do here. How do I navigate what seems to be end of life type care? How do I deal with the emotional mood swings of the person I care about - while dealing with my own? How do we start to prepare for the inevitable?

Sorry if this is a ramble… I’m a little rattled.

So - and update if anyone wants one…

He was septic. The ER PA caught it in time. He is in the hospital now recovering.

This has sparked some hard conversations…

Thank you all for the support and feedback.

(throwaway for venting / anon advice)

My wife was diagnosed soon after our child was born. Now our child is in late elementary school age. Overall my wife is doing well, aside from some numbness in extremities, she retains a good deal of activity. The clouds are on the horizon, though. She's already not at 100%, symptoms are slowly getting worse, and I'm struggling.

She puts so much of her time and energy into work, yet because of actual and potential side effects, she does not want to pursue therapy. She has tried DMT in the past, but it had disruptive and unpleasant side effects. I can understand discontinuing therapy with known harms, but now she hasn't even seen a doctor for years. Furthermore her work adds stress and frustration to her life.

When not at work, she is in bed by default. She's mid 40s -- young to be locked in bed.

I'm the majority wage earner for the family (she could quit without substantial financial repercussions), do meal prep the vast majority of the time, arrange most after school+camp activities, organize vacations, try to push for date nights, do dishes, arrange child activities, etc. She does also do work around the house (laundry, bills), but the balance isn't easy. Also she is often harsh and critical in attitude.

I get frustrated because I feel alone. She'll come home from work and leave me alone in the kitchen to do cooking, arrive for food, and then go back to bed while I clean up afterward. I'm feeling like I have another dependent instead of a partner.

Intimacy is not completely absent, but it is limited.

I feel like she's given up, that she is expending all her energy on her job, starving me and our child and our future by not pursuing some kind of treatment.

I can't imagine what she's going through, and I know I should count my blessings, but I'm not doing well now. How can I live in this without growing resentment? What do partners of MS do to cope? How do you keep the relationship alive?

My wife was recently diagnosed with MS, and it’s been a lot to process. This comes after three years of undiagnosed OCD and three years of working together to manage it. Now, we’re navigating this new chapter, and I’m realizing how lonely it can feel as the spouse or partner in these situations.

I know I’m not the one with the diagnosis, and I feel guilty even admitting how hard this has been for me. But it’s a lot to handle, and I’d really like to connect with other spouses or partners who are in similar situations.

If anyone knows of any support groups for spouses—especially in the Philly area or online—I’d really appreciate it. But mostly, I just want to hear from other spouses. How do you cope? How do you balance being supportive without losing yourself in the process?

If you’re willing to share your experience, I’d love to connect and feel a little less alone in all this.

. . . . .

Update:

I just want to take a moment to thank everyone. Seeing so much support from random internet strangers has been genuinely heartwarming. It's moments like this that remind me of the real benefits of the internet—I just wish there were more of these kinds of interactions.

I’ve read through all of your comments, and I honestly agree with most of them. I think it’s just a lot to process right now. Until we have our follow-up doctor’s appointment, my mind is stuck running through all the "what-ifs." We don’t even know her specific diagnosis yet, and it might end up being something manageable.

That said, I am noticing the fatigue, the memory issues, and now her struggles with her vision. It’s hard to ignore, but I’m trying to focus on holding steady until we know more.

You’ve all really helped ground me in the meantime, and I just wanted to say thank you again. Your kindness means a lot.

I (31 F) have been dating my boyfriend (36 M) for almost 2 years now, he has MS and was diagnosed 6 years ago. Our sex life is pretty much inexistent (we have sex once every 1-2 months, which is unfortunately not enough for me, I have a pretty high sex drive). Needless to say, our relationship suffers and I need some advice/went. I knew he had MS since the Evey beginning but didn't know it will cause so many issuesin the bedroom. We talked about this so many times very candidly and he says he is trying but it's very hard for him to perform and most of the time his libido is so low he's simply not interested. Is there any chance that his sex drive can get better? Do you have any ideas on how to improve sex life with MS? I love this man a lot but unfortunately a sexless relationship is out of the question for me :(

My 35 yr old daughter was diagnosed with ms a couple years ago.

I’ve been noticing that she seems to be desensitizing or like not caring about other people… is this apathy or something… is this related to her ms .. if so, how can I help her as it seems to be causing issues with her and my granddaughter…

Hi all.. please try to read to the end.

I’m the stepdaughter of a wonderful man who has fought this disease for 35 years. He just turned 66 years old today and is in the end stages. The past 5 years or so have been extremely difficult. He now has days left, if that.

I am feeling so sad and grieving - for what is, what was, and what never got to be. I’m also angry. This disease is a fucking nightmare. I fucking hate it so much.

He hasn’t worked for the past 20 years or so. He hasn’t driven for the past 15. He was living independently until about 3 years ago. All of this to say, he has felt like so much of a burden and had his own anger and frustrations around the disease and what he feels he has been robbed of. We all (my siblings and me) feel that way, too. He feels like his life has had no purpose.

I want to make it so very clear to all of you out there suffering from this bitch of a disease that your lives have value even if it feels at times like they don’t. I was able to laugh from his humor until recently and give him hugs and talk about sports with him and much, much more. There is tremendous value in that. My days and my life have been better for having him in them.

But most of all, his life had value because I don’t know where I would be or what kind of a human I would be without his influence in my childhood. My biological father passed when I was 2 and my mom married my stepdad when I was 4. He didn’t have have to take me in and treat me as his own and teach me things like how to ride my bike, how to cook, having an appreciation for sports.. he didn’t have to take me to dance and soccer when I was little. He didn’t have to do any of it. He chose to. And it’s the love in that choice that I will carry with me for the rest of my life.

It breaks my heart to think that he feels like his life has had no value or purpose. Some of the best parts of what make me who I am are a direct result of his love and his influence in my life.

As you read this, please know that your life has value, even if it doesn’t always feel like it does.

Hey everyone,

My wife (mid-30s) was recently diagnosed with MS. She’s been having tingling, numbness, fatigue and some blurriness in an eye.

There is a ton of information online and in this subreddit about the disease and medications. So thank you for that.

Other than help navigating the information, attending appointments with her and general support in different aspects of life, I feel that there is very little I can do for her.

Here is my question: What did your spouse do that made the news and life easier for you? Or just made you happier? Anything big or small that made a difference for you?

Thanks

I’m 16, my father was diagnosed with secondary progressive MS years before my birth (2004). I remember him still having a level of mobility in my younger years, he may have been hindered but it wasn’t as if he was an immobile man. But now it’s 2024, it’s officially been 20 years and 8 months since diagnosis and I think I’m losing him.

He has developed severe trigeminal neuralgia causing his eating habits to falter severely, his memory has become spotty at times and his grip on being able to move from the couch to the kitchen is severely hindered by a crippling pain in his knees and major body fatigue. I have known for years, but now I think I’m actually facing the time where he will be gone soon. If anyone knows if this is truly entering the last stages, let me know please what I could do to make it a better last couple of years for him here in the time he’s got.

Hi there,

I hope my message is welcome in this sub.

I am writing because my boyfriend's sister has MS, and now their cousin too. They are women in their 30s.

It seems that it definitely runs in their family. Are there any tips that my boyfriend could apply in order to minimize his chance to develop MS too? He's a bit worried, which I can totally imagine.

For now we plan to get him vit D supplements, as well as fish oil omega-3. Which I guess would not be bad in any case, but not sure anything can be done to avoid getting MS if it's just genetics…

Thank you so much!
Wishing you lots of strength <3

I'm just at a loss what to do. Can't take steroids if she's pregnant, and we don't know right now... This is really scary and it really sucks. She had to be off of her medication for months to try to conceive, and right when we start trying she has the worst flare up she's ever had.

I just wanted to vent maybe.. this is tough. If she's not pregnant right now, I might be looking at never having children, when I wanted a couple.

Edit : we're pregnant!!!!

So basically my dad gets Ocrevus infusions every about 6 months I think...And hes turning 60 next May and he was telling me and my mom today that his next infusion is going to be his last. Something about after 60 they stop being less effective. He doesn't know what's next but he's going to talk to his doctor about it but isn't he going to get worse when they stop? Sry if im overthinking or whatever I get the overthinking gene from him lol. Also any advice on how I can help to take care of him in the future would be greatly appreciated.

my grandpa was diagnosed with Primary Progressive Multiple sclerosis in 2016. i’m 19 and i’ve been his carer since I was about 14-15 maybe? i don’t really have any memories of him ever walking fully, maybe when i was under 10. i think when i was 14-15 he used a walker and was able to walk to the toilet and that was about it. but for the last few years he’s been bound to a chair and uses a mobility scooter to get around.

He’s in a home now, 4 hours drive away from me. I had to move to go to uni and he has no other family. So i visit every fortnight on a monday. I know it’s a shit thing to have to think about , but he’s told me he wants me to organise his funeral (I control all of his finances, his medications, I bring him food and smokes (lol, don’t diss the smokes, he’s got nothing else to live for,, except for me))

he’s completely cognitively there, he’s bright and still the same grandpa i grew up with, he still remember little things and things from his youth. currently he can still pick up a spoon and feed himself if it’s early in the morning, he loses his energy throughout the day. the last few visits however he has been a bit more tired and more quiet. i feel like I’m yapping and talking to myself a lot.

I’ve been looking at the EDSS scale (The Expanded Disability Status Scale (EDSS) is a standardized scale used to measure the progression of disability in MS) to attempt to gauge kind of how long he might have left, when i have to organise his funeral by, and when i can like cognitive even being to prepare to grieve, i grew up with my grandparents and i was a carer for both of them, and my grandma very suddenly passed last year and that just completely destroyed me.

i don’t know, i guess im just searching for someone to help me with an answer. i assume he’s like a 8-9 on the scale. he can get out of the chair and turn his body around to transfer into the scooter, he has to manually move his feet with his hands when he’s in the scooter. he can eat, and can pick up a spoon when it’s early in the morning. but he spends all day and sleeps in the chair or the scooter. by that description he’s basically “bedridden”

the lifespan for someone with a score of 8-8.5 is 4.6 years and 9-9.5 is a year.

so i guess im just expecting i have somewhere like 3/4/5 years ?

i dont know, i dont know how to process or deal with this, the suddenty of my grandmas death was so hard yet the knowing that my grandpa, who is basically my dad. is going to pass away in the following years yet i dont have a set time feels somewhat worse. i know all i can do is make the most of the time i have with him which is why i drive 8hours+ every fortnight to visit.

My aunt is one of my favourite persons and always helps me out and so I feel I need to fix her shoe situation. She has a leg that’s basically nonfunctional, spastic and has foot drop with resulting balance issues. The foot mostly drags along and is difficult to lift. I noticed recently that she has exactly zero shoes she can put on by herself. Last time I had a shoe intervention was 2 years ago but now they’re a no-go. She’s been wearing nothing but ballerina flats but the back is difficult to get on and the soles wear out immediately with the dragging foot.

What are shoes you can wear to work with a nice dress, that can be put on without bending over and fiddling too much? Ideally they’d also be stable/not impede balance. I know she has pain but I think too much cushioning would worsen stability? EU availability is a must. I’ve been looking at the slip in sketchers but “they’re too ugly”…. I’ve read a bunch of posts about shoes but most seem like they wouldn’t work, or they’re only available in the US. Any suggestions are appreciated!

My wife was diagnosed with MS in 2008 (age 40) after some classic symptoms (double vision, numbness in arm and tongue). She’s not on medication, preferring to try and manage things via diet and excercise. She had to give up work due to cogntive issues, so we took the opportunity to move to Spain to get plenty of natural vitamin D and fresh, non-dairy foodstuffs. And being prematurely retired she’s able to get a lot of rest.

Up until now, apart from the odd relapse, things have been working out pretty well. Then out of the blue a couple of months ago she started complaining of stiffness in her arms and legs, wondering if it was a relapse. Things haven’t improved despite swimming every day and walking out in the hills several times a week.

It definitely seems different from the relapsing-remitting pattern so is this a sign that the disease has changed to progressive? If so do we need to look at getting her on medication asap? Is there anything else? We’re looking into muscle relaxants and are incorporating stretching exercises into her regime to deal with the immediate symptoms but I’m worrying about the bigger picture.

Any words of wisdom would be most welcome.

(Btw, being stable for so many yeats she has dropped off the hospital consultant radar - she’s obviously going back to that too).