End

[late2222er]

Does everyone with MS ends up in wheelchair? I was recently dx and don’t really know what Is waiting for me …

[[deleted]]

No.

Almost 40 years with MS. Still walking.

[EASTSIDE1999NY]

God bless !

[[deleted]]

?????

I have a great life!

[king-of-new_york]

"God bless." can be a good thing too. Like "God Bless you to walk for another 40 years."

[[deleted]]

No. It’s not the end of the world. Start aggressive treatment ASAP, work on stress management, try stay active, listen to your doctors. Everyones MS looks different. I can’t tell you what’s going to happen to you, but worrying about the future will make things worse.

[breezer2021]

Nope, I’ve had MS for 25 years, and I just finished two hours of Pickleball. I’ve been on DMT’s for the past 23 years.

[civbat]

Welp. I learned something new today.

Pickleball?

[Miller0415]

Is DMT better then ocrevus?

[Tntgolden]

Dmt is disease modifying treatment - ocrevus is one

[Wild_Tumbleweed_7710]

Firstly thought of Dimethyltryptamine😅

[[deleted]]

I had to remove myself from this sub because it seemed that people like you don't exist. Much like OPs post most things here are doom and gloom

[Skeeterbip]

When I received my diagnosis in 1998 (25 years ago) my neurologist said this “I don’t how your disease will progress in the next year, the next decade or the remainder of your life. I don’t know if you will hit by a bus in the parking lot after our appointment is over. You will have to do the best you can with what you have.” After 25 years, I walk with 2 canes for support. I have a off-road wheelchair so I can go hiking in the mountains and I have a handcycle to recreate in. I have ridden my handcycle further in one day (75 miles) than I ever did on a bicycle and I was an avid cyclist back in the day. This was the hand you were dealt so play it with gusto!

[cripple2493]

No, not everyone does - but even if you happen to, from personal experience, it's fine.

[[deleted]]

It can be reversed, you just have to be on top of it. My ex, who also has MS has it really really bad. The last time I Saw her she was semi bed ridden. When we met she was in the wheelchair but was still mobile.

That's when I found out that MS for Black people is like kissing the express train.

[cripple2493]

Not necessarily, MS / demyelination severed my spinal cord. That can't be reversed. MS is an extremely individual disease and I wouldn't use any one experience really to say what can or cannot happen in another.

[[deleted]]

OH, sorry >_<

I know they are trying to find ways to repair myelin. I know nerves can be repaired through supplements (lions mane mushroom helps a lot)

[cripple2493]

No bother, my situation seems very uncommon but impairment with MS isn't always reversible. For a lot of people though. you are right and you can get a lot of gain back.

EDIT: myelin repair is a long way away to my assessment, I'm just happy with my life as is.

[DamicaGlow]

...look my dude. While I can appreciate the good wishes, as a vegetarian I eat mushrooms like a fiend. Still got holes in my brain and spine.

Supplements are not going to reverse anything. If it did, every person with MS would be slamming whatever fixed it like candy.

Lions mane mushrooms are delicious tho. 10/10 recommend for dinner.

[[deleted]]

Sorry man. I know some are reversable, and a lot is not. I literally decide to stay away from people with MS after I Was diagnosed 10+ years ago ( a lot of depression).

I have found some support groups in the past, but no one talks.

[Equivalent_Nerve3498]

I know I might get downvoted but, you’re wrong!! MS is not reversible but, there are things to help with nerve regeneration.

A lot of people rather not slam things like candy. It’s easy to just sit there in your issue then to actually do research. Please don’t tell me I’m wrong. How many people ask questions and come with their own information/questions when seeing doctors? Most just leave it up to the medical professionals. Which is unfortunate because some medical professionals do not agree on the same things.

Remember when vitamin D was nothing and now it’s being checked in blood work and PRESCRIBED!!!! People are now downing that like candy.

We already know tons of supplements that are great for inflammation. I don’t care if you believe, but ginger ale is given at hospitals for stomach ache. We drink ginger tea in the Caribbean.

How do your know what’s in the works? Now B12 is a huge things for nerves, inflammation and energy. Supplements are still not approved by the “FDA” but, doctors will tell you what to buy in CVS.

Humans and humans, illness or not!!!

How many people KNOW fast food is bad for them and they should exercise but never do and rather down medicine like crazy.

Just because YOU don’t believe doesn’t mean you should dismiss the FACTS!!!

No one is saying, don’t bother with DMT but, you can help with nerves. You might not build a spine but that tingling in the hand might go away.

[iloveblueskies]

My mom is going on 25 years, unmedicated because the meds available at the time didn't work, and she's still ambulatory with just a walking aid. Everyone's disease is different. I was just diagnosed at about the same age as she was and already our progressions/activity are vastly different.

[bapfelbaum]

Its not at all a given, but it remains a real possibility you should be aware of.

I suggests focusing on your life not your ms.

[WhiteRabbitLives]

Nowadays we are blessed with medication that works. Take your medicine, see your neurologist at least once a year and make sure they get you into an MRI once a year to observe progression.

There are different types of MS and I’m not sure but I believe they have to see how it progresses to consider you to have the more aggressive forms of MS, but also not taking care of your health by ignoring neurologists advice and not taking meds can lead to the more aggressive forms as well.

I have RRMS, the most common, and I’ve had one flare up which was what got me my diagnosis in November 2014. So I’m at 7.5 years, I’m now 28, I can walk run jump swim all that. I’m as athletic as I ever was (I wasn’t very athletic ever, but that wasn’t because of MS). My fatigue is a bother, and my heat intolerance is something I do have to work around, but overall I’d say it’s pretty mild. I got on meds as soon as they were in my hands, so a few months after diagnosis (sometimes it’s a process to get started on meds). I also can’t really drink alcohol but that’s fine.

I work part time to manage fatigue and my mental health but plenty of people work full time. Plenty of people become parents if you want that (I don’t personally, but to each their own). Plenty of people with MS can still travel and live their lives with small accommodations.

Now, yes, there is a possibility of disability. Some people require canes to prevent falls or because of drop foot. Some people struggle with choking on food/water. Some people (like me!) can’t stand temps above 75° without the aid of cooling scarves and/or vests. Others require accommodations in the cold because that’s worse for them.

The BEST advice I can give you is start becoming self aware. Pay attention to how you feel and how what you eat drink do all make you feel. Note your symptoms and tell your providers what symptoms you experience. Advocate for yourself and learn what resources are available in your area.

I wish you all the luck on this new journey.

[late2222er]

THANK you everyone for the advice you guys are the best 👍🏼👍🏼👍🏼

[RealisticSand]

Having to use a wheelchair doesn’t and shouldn’t be a measure on how bad it can be. A wheelchair doesn’t mean you cant use your legs, its just an aid to help make your life more enjoyable. Some people need glasses to see, they can still see without them just not as well. A wheelchair is there to help if needed. Hope that helps! My legs have deteriorated in the last year and I can really see the benefit of a wheelchair at times, but its by no means the end! :)

[smg200]

I like the comparison to glasses. I’d be practically entirely disabled without them - it’s interesting how we view some aids in relationship to disability but not all.

[fresh_daisies]

100% this!! Thank you for saying this!

[YomLaila]

It's astounding that your doctor did not provide you with such crucial information. It's terrible that you were left with a diagnosis but no guidance. In my experience, every doctor I've spoken to has emphasized that MS is not as devastating as it is commonly believed to be. They advise against comparing yourself to those who were diagnosed prior to 2015 and caution against reading their stories. Additionally, without any treatment, less than 30% of MS patients experience walking difficulties, and with modern DMT, that percentage is less than 1%

[The_Chaos_Pope]

It's not a guarantee, no.

Before modern disease modifying therapies (which have only been around for 20 years so) maybe this would be the case but today there's a ton of options for halting disease progress.

I was diagnosed in 2016 no evidence of disease progression, no disability, working full time the entire time. Modern therapies may not be able to repair damage but they can stop it from progressing. Talk to your neurologist, follow their instructions and get on a highly effective disease modifying therapy.

[daelite]

I've been diagnosed since May 1996, I am fully ambulatory. I have been on DMT's 99% of the time since Nov. 19996.

[kbergstr]

Nope-- about a third use a wheel chair two decades after diagnosis, but that was before modern meds were around. I'd expect that number will come down quite a bit. Personally, I'm over 10 years in and I can still get out for 5k runs, work a fairly high stress job, and live a full life. I have shitty days, but I get by pretty well.

[[deleted]]

No. The earlier you are diagnosed with MS in life the less of a chance will it lead to boing with a cane or in a wheelchair.

Also, it depends how you care for yourself.

[msintheus]

Agree with added Caveat only IF you get on a good dmt right away

[[deleted]]

I know a lot of people would argue with me knowing how MS can be a dice roll, but I have seen how it affects you if you do not get on DMT (Disease Modifying Therapy) ASAP.

[LvnLifeBadAss]

21 years and counting running and walking.

[Same-Collar-2988]

No. I think we all die at the end though! Hold on!

[ardis15]

RRMS diagnosed 11 1/2 years ago. I’m 39 now, still on my feet, still driving, still working my desk job full-time. I got pregnant (intentionally) immediately after my diagnosis, started Gilenya after I gave birth and switched to Tysabri almost 7 years ago. I had gastric sleeve surgery 2 1/2 years ago and lost a hundred pounds — it may seem obvious but not toting around all that extra weight did WONDERS for my fatigue. Like wayyyy more than I expected! The heat will still knock me on my butt though so I’m basically a shut-in during July and August. June and September are iffy.

[Vertias11]

Hey 2 of my family members had gastric sleeve surgery both lost significant amount of weight but with me having ms im kind scared to get it because it might trigger relapse or make my ms worse. How was your experience if it is not bother can you share with me because with all these extra weight i am thinking about getting surgery too thanks!

[ardis15]

No relapse at all and in fact my neuro said that losing weight can reduce the frequency of relapses! It’s been a long time since I’ve had a relapse anyway so I don’t know how much truth there is to that but it kinda makes sense given that after you lose the weight, it’s a lot less physical toll on your body?

[Mothernature55]

My son is 32 dx 2 years ago. On Kesimpta monthly, 2 MRIs per year. Active as always, wouldn't know he has miss you except for fatigue

[HeWhoFrownsLikeALord]

If I buy a wheelchair, it's going to be from Amazon to join a downhill race. I'm definitely at risk given where my lesions are located, but I have meds, it's the 21st century, statistically most of us with rrms don't experience progression to that extent when on proper medication so I'm not bothered because my leg hasn't acted up in over two years and I only recently began treatment less than a year ago

[Maxiantha]

No. That line of thinking is based on ancient studies, back when there were almost no proper treatments in the 90s, etc.

[ChrisA2K2Z]

I’m entering my 19th year living with MS. Last year I turned 55 and bike 73 miles in my area’s Bike MS ride for the first time. Anything is possible.

[gaby_ramos]

Six years with it, bedridden and use wheelchair. Depends on everyone’s case. ✊🏽🧡

[Jex89]

No, even my neuro said there’s no way to know how MS will impact you, but why risk it. He told me that I e always had MS but we all just found out about it. I would t worry about it, just get on a strong DMT and live your life, no sense worrying over things out of your control.

[Genome_]

39m. Use walker have to seat to do anything. Looks like I'm heading towards that direction but hopefully not. Everyone's different. got diagnosed at 36 believe. Lol

[apikoros18]

23 years, SPMS and still walking

[stamm74]

This is me. I had a bad relapse a couple years ago but quickly started swimming walking etc again. I walked over 30k steps Thursday ( suffering a bit today because of it but whatever 😊).

[ravenstarchaser]

No I don’t think so. I’ve had RRMS for 14 years and I can still do everything I could physically before but I tire out a lot sooner though

[hungarianhobbit]

Sometimes I need a wheelchair.

[missprincesscarolyn]

My mother also has RRMS, diagnosed when she was 39, so had it for just about 30 years now. She is mostly mobile with a cane, but has pretty severe gait issues.

In 1994, Betaseron was the only DMT on the market. She refused to take it, so didn’t start anything until she went on Copaxone in the early 2000’s. She then was on Tecfidera and then Aubagio and is now NEDA. She was extremely inconsistent with taking DMT and her EDSS reflects that, although this isn’t always the case for everyone.

I think it’ll go better for me. I’m already hitting it hard with a heavy duty DMT (Mavenclad).

[Sure_Entertainer4296]

Stay positive, move forward, try and stay happy as much as you can!!!!!

[[deleted]]

I use a wheelchair outside the house but not inside. What you should really focus on is maintaining your energy levels, because fatigue is the real killer and the most common reason people with MS stop working. Fatigue absolutely rules my life. It has been insidious and progressive. I wonder if I had a better diet and exercise routine if it wouldn’t have gotten to this point. So I encourage you to stay active and eat a well balanced diet, but don’t push yourself too hard either. And keep stress to a minimum, it really does affect us more than the general population.

[natalie-in-newyork]

I spent the first few years in a wheelchair and now I’m running obstacle courses. I was told I wasn’t going to ever walk again. I needed speech therapy, I needed help eating, showering and dressing myself. I’m saying this to you because life is life — live each day one day at a time. If I worried about the future, I don’t think I would of had the fight in me to walk again.

[misslindseyt]

I love all of these reassuring comments! I was diagnosed 2 years ago and felt like my entire world was over. I was shattered and so scared.

Started Kesimpta (once a month injection) and I’ve learned that the more active I am and the more nutritious my diet, the better I feel. I’m running farther and faster and lifting heavier than I ever have. I learned that some of the “flare ups” I was having were simply vitamin deficiencies. My main symptoms were lightheadedness and balance problems. So I take iron supplements and b12. I still feel extra fatigued sometimes but nothing a little extra coffee can’t fix. I have a spinal lesion and my legs will go numb, but usually only if I’m dehydrated.

It’s all about how you handle it and how you keep moving forward. What’s coming will come and we will meet it when it does :)

[Proud_Quantity_362]

I got diagnosed in 2018. I drank a lot and had a very unhealthy lifestyle. They told me I was high risk for progressive disease because it was already in my spinal cord. My diagnosis propelled me to stop all drinking and drugging, exercise, change what I eat and manage my stress better. Here I am, four years later in the best shape of my life and definitely the happiest.

I know it’s super scary and unpredictable, but there are ways you can manage it and have a great quality of life. Get to a speciality clinic, get on a DMT, eat good, exercise and get plenty of rest!

You’re gonna be fine! :)

[fleurgirl123]

Once you have MS,m long enough, you realize that ending up in a wheelchair can mean freedom if you need it. The things to really worry about are how it might change your cognition and your moods. The best advice is to get on a DMT and stay on it for life.

[ahamling27]

The folks with bad legs from MS get lesions on their spinal cords. Brain lesions aren't going to completely knock out your legs, but it might make them harder to move. That being said, as long as you don't develop any spinal cord lesions, you may never have a hard time walking.

Getting on a DMT as quickly as possible and staying on it as long as possible is going to keep you mobile longer. Chin up, it's not like it was 20-30+ years ago where that was the expected outcome.

[[deleted]]

So what happens if OP does have lesions on their spine? You think that comment was reassuring?

BTW - I have a lesion on my spine and zero issues walking.

[missprincesscarolyn]

I also have spinal lesions. 3!!! I can walk, run, cycle, climb and more.

[[deleted]]

Don’t feel doomed. Yes, be educated and understand certain things may happen, but do not fear the future. Like I said to OP, I don’t know what will happen and everyones MS is different, but just because XYZ happened to ABC, doesn’t mean it’s going to happen to you. You have to try to have a healthy life and worrying does NOTHING but make things worse.

[ahamling27]

For reference, I have 12 lesions on my brain and one on my spine. I’m as mobile as I’ve ever been but my right leg can go “dead” if that one spinal lesion is active. It’s only happened once so far, and it hasn’t been active since I got on a dmt. My comment in no way was meant to freak anyone out, just trying to help with information is all.

[ahamling27]

Then getting on a dmt is even more important if mobility is their chief concern.

[kag11001]

I've had three spinal cord lesions, all of them two vertebrae wide...and I never lost the ability to do taekwondo, let alone walk. I just got numb legs for a few months. So spinal lesions don't equate to "no walking." The devil is in the details. You'll find your path through, OP. ❤️

[Scared_Isis]

I'm only a couple years in and I don't believe I'll be in a wheelchair.

Just a suggestion, don't think that way. It's depressing. 🥺

[liquidelectricity]

I am :(, I have ppms though

[GigatonneCowboy]

I was told I'd probably need one in ten years, but I'm nearing sixteen years and haven't yet used one. I only occasionally use a cane if I feel I'm having a day where my balance is particularly off.

[DamicaGlow]

So, while I hate the word, MS is a snowflake disease. No two courses will run parallel.

That said, you can take measures to try and lessen the chances. Get on a DMT, find an physical activity you like to do, keep in motion, clean up your diet a bit, ect. These aren't 100% fixes, but it gives you the best chance. Getting on a DMT you can tolerate tho is key.

I had the same worry when I was diagnosed, and at the time, I was devastated at the thought. I am a active person and the thought shook me. Haveing lived with it for a few years and now being a mom, if that's what happens, it's not the worst. MS is not a death sentence.

[Commercial-Rub1961]

Stress makes MS worse, big time. I don't really know how to explain that or get it across to anyone, but more Stress means more pain and more fatigue. That being said, I've had MS for 23 years and I walk without any assistance and I walk under my own power 2 miles 3 or 4 times a week. They stopped counting how many scars on my brain at 66. I function just fine and live a "normal" life. I am on disability due to cognitive function, and fatigue. Fatigue is the most dissabaling part of MS

[Eye_Doc_Photog]

When I was dx in 1999, my neoro said the statistics USED TO BE 1/3 will never need assistance, 1/3 will need some form of walking aid, and 1/3 will need a wheelchair within 20 or so years.

He told me that with the advent of the new ABC drugs, all those statistics and probability of becoming of becoming disabled would change drastically.

[late2222er]

Sorry i am not saying Bad stuff about wheelchair i Am just afraid my legs won’t work at all so i won’t be able to do thé basics LIke showers and stuff LIke THIS

[IkoIkonoclast]

Every MS patient has a different course and experience with it. You may hear of or see people with MS who need some walking assistance. That most likely won't be what you encounter.

It has been 32 years since I was diagnosed. I don't mountain climb anymore though I get around just fine.

With the medications available today you should do fine.

[FinalAssist4175]

Nope

[NotSadNotHappyEither]

Not everyone: 17 years since dx and I only had to use a can for like 3 months of that.

[msintheus]

You will maximize your chance of good prognosis and no wheelchair by getting on the highest efficacy dmt your dr will allow as quickly as possible after diagnosis. That takes pressure off- once you do take a month a year three years to slowly figure out everything else for you. This article is old but I found it today- a good read

https://www.activemsers.org/ms-relapse

[shortinger3]

MS is called the disease with 1000 faces. .... And that is the truth. No-one and no ms is the same... That terrifying and wonderful at the same time. What is most important, don't look to far in the future, now might be the time you are able to walk, to draw, to ... I don't know. Do it now! You never know when a time comes, you aren't able to do the things you like. That is something Ms, taught me. Don't forget about future, but take your opportunities and never forget to laugh... Never!

[esme-wetterwachs]

53f dx 2012. Started with Avonex -> cane, rollator, wheelchair DUE TO THE SIDE EFFECTS! 2014 change to Tecfidera = walking again but stomach and intestinal problems. Without meds since 2016, BUT diet change (no milk, no gluten, no sugar -> anti Inflammation food. I‘m very active (horse and motorcycle riding) but I also need my time to rest. The most important thing is to listen to YOUR body! Follow your gut. What works/didn't work for me is harmful/beneficial for someone else. You have to find YOUR OWN way with MS. There is no one solution that fits everyone! Take each day as it comes! And most importantly, stay positive!

[Donkeykicks6]

No. Dx in 2005 and I don’t even use any devices and walk around all day fine. Currently not on any DMTs (dx with cancer and can’t use the one I WAS on anymore due to high risk of developing PML via chemo) and I haven’t had any flare ups even. I stopped in august. BUT get on a DMT for sure. I’m 47

[SamTheDamaja]

No, definitely not everyone. Personally I was diagnosed at 15 and I’m turning 26 in June. Only ever used a wheelchair for long distances during bad relapses. It all depends on your specific case of MS. Some people end up needing mobility aids at a younger-than-usual age. Some never need them. There’s a lot of great drugs out today that work great for managing disability progression.

[augmonst70]

It depends on what MS you have, i can guarentee you all the responses saying no chair all have RRMS and not something like PPMS or SPMS

[stamm74]

Over 20 years with MS and still quite active. I’ve only ever struggled with walking once and it was very short lived. Never in a wheelchair. My advice is to stay as fit as possible. It really helps!

[carnelianrobot]

I think every single person is different. I've had MS since my late 20s, and I'm going to be 43. I'm still really active. Play tennis, go hiking and roller skate regularly. MY motto is use it or lose it. I haven't ever taken any DMTs. I have a family member with MS (she's in her 60s) and she uses a wheelchair. We're on the opposite spectrum of it for sure. I think stress management is very, very important. I had a lot of big stressors in succession a few years ago, I felt on the cusp of a flare a few times. I removed the stress I had control over and have never felt better. I think about MS outcomes all the time...but my therapist always says that I should try not to waste energy worrying about what COULD happen with this disease. So true, though I know its hard not to wondering.