Last reply 1 month ago
Long term

Does having ms mean that I will inevitably end up in a wheelchair? I know it’s different for everyone and there is no definite answer but In general does it mean that eventually I will? I’m 21 and currently have no symptoms Other than some tingling if I excercise and I find it hard to accept That I even have ms never mind the thought of not being able to walk etc but it always plays on my mind when I’m trying to sleep or if my friends mention anything about their futures because I’m uncertain of mine and have nobody I can relate to.

It would be nice if anyone a bit younger with ms could reach out just to have someone that understands a little or if anyone diagnosed with ms at a younger age could share their experience
I know I need to stop worrying about ms while I’m still fully able to do everything as if I don’t have it and need to start living my best life again so if anyone is up for Going to a rave festival or any other shit hmu😂😂

Is there an average amount of time people go with out relapsing?

Like how many years can I go with being disability free?
Or an average out of time before I will see changes in my mobility?

Is diet important should I make changes?

I take vit D is there anything else I could take to help?

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Hiya @georgia_roberts omg I know exactly how you’re feeling! I was diagnosed over a year ago when I was 24. I had thoughts about my future and when I would end up in a wheelchair (or if I ever would). I’d been having the pins and needles and numbness in my right arm for about 4 years before that and I got sent to physio for 2 of them years trying to get rid of the pain. I did some research on how long it would take to progress from RRMS to any other type of MS and it’s usually around 15 years. That scared me so badly! But I did start my Ocrevus last year and all these new DMT (disease modifying treatments) are showing hope to slow down the progress. To be honest there’s not a certain time within the relapses and your MS nurse will help you with them. In regards to the diet, there is lots of different information about it. Obviously eating healthy is going to be better for you whether or not you had MS. But I have been looking into that too and there is something that I searched for called ‘MS diet’. It basically says to cut out cows milk and other stuff like that. I’d say give it a go and see if it helps with the tingling. If you need to talk message me anytime xx


georgia_roberts
1 month ago

@selina_abdul_manaf honestly it’s so hard not being able to relate to anyone of my friends! I don’t think there’s a day that goes by where I don’t think about ms and how it will effect my future even though I don’t have shot one right now it still effects me mentally, I’ve only had 1 relapse where I had tingling and numbness but it fully recovered and now I’ll just get tingling everyone and then but that’s it and thank you!!!!! Xx


highlander
1 month ago

@georgia_roberts
Hiya 😀
Speaking for myself.
I’m 51years old and I’ve had symptoms of ms for years but didn’t know I had it until my foot started not working a couple of years ago.
Keep as healthy and fit as you can.
Your using one of the best meds available and it’s only going to improve in the future.
20 years ago there was hardly anything.
Live your life to the full and worry about it when and if you can’t.
This mate of mine @dominics is the same age as me and has not long got back from a trip to the foot of Everett and he’s had ms for 26years.
It’s not all doom and gloom..
Honest 😀


georgia_roberts
1 month ago

@highlander I am so happy that I’ve been able to start ocrevus I know it’s one of the best out there and am thankful of that!! I try to keep as fit as possible before lockdown I would go to the gym almost everyday but I don’t eat well do you know if changing you diet is helpful?

Wow that’s amazing!! I need to hear more stuff like that because sometimes it does bring you down because I read so much doom and gloom and gets me worrying about my future even more!!

Thank you xx


highlander
1 month ago

@georgia_roberts
Under your post you’ll see some boxes relating to the things that you mentioned.
You’ll see one marked diet you’ll find loads of other posts made about it..
But the only one I use is to eat a healthy one, simple as that.
But like you say we’re all different.
Keep smiling 😊


brando
1 month ago

Unfortunately it’s differernt for everyone, I have had this disease since 2008 and I have shown no sign of progression in more than 10 years. As long as you are taking care of yourself and leading a healthty lifestyle you most likely won’t have any issues for a long time.

good luck out there.

Brando


dominics
1 month ago

@georgia_roberts , @highlander is right, there really is no telling. I was interviewing Brandon Beaber MD – one of the American YouTube neurologists – yesterday and he made an interesting remark about all the people who do well.

He said he had quite a few patients on his books, a few of whom are in their 70s, who are relatively untroubled.

Try to remember that all of the visible MS on places like here is not an accurate cross section of everyone. Few people pole will talk about it or worry about it much of they don’t have to.

I remember being newly diagnosed and it was ping into my head every 5 sec. Looking back I’d say to try your danger to get on with life. Stay as fit as you can as that makes a massive difference. I mean for. Not a stroll but a good amount of cardio several times a week. I can still walk 20 km. If I lived near a decent pool of be biased towards swimming. I used to do 1500m 3x a week about 6y ago but I’ve moved.

And take the best DMT you can. You’re not taking it for now, you are taking it with the 20y view of extending the time to disability and to reduce the severity of it when it does occur. And, the thing few people realised until relatively recently is that with a good DMT you are helping to normalise age related brain volume loss. With untreated MS it is faster than it should be.

I am on Ocrevus, my 4th DMT in 26y. It is the best tolerated, fewest side effects of any of the drugs I have had. Tecfidera – 7y – caused regular flushing and loose bowls. Fwiw!

Illegitimi non carborundum is a good motto. Don’t live in the MS or it will own you. Make it be a part of your life and not the other way round.


clare80
1 month ago

Hi @georgia_roberts, it is daunting and I can’t pretend I’ve got it all sorted out, but a couple of things that helped me to focus on enjoying life in the present rather than worrying about the future:
– being diagnosed young means you have identified this disease early and so are in the best possible position to deal with it and stop/delay progression.
– the stats you see about average disability progression are of limited relevance. Not only because we are all different, but because if for example they refer to a period of 15 years, you have to remember they are talking about people diagnosed 15 years ago, before our current DMTs existed. As treatment options improve outcomes should improve as well.
– mental health is just as important as physical health. It would be such a shame to let having MS get the better of you mentally before it does physically.

It’s normal to be feeling scared and anxious right now, but be kind to yourself and you will learn to do this kind of crazy mental gymnastics, where those concerns about the future can co-exist with living your best life. Find things that help you balance out the two aspects. This group and your MS nurse are good places to acknowledge and share the worries. You might have a good friend you can talk to, but accept most of them are there to pull you towards “normal” life. You’ll realise over time who the helpful people are and who are the less helpful ones (a friend refers to them as Dementors!) and you can chose who you spend more time with.
It’s a bit like one of the modern models of grief. You might feel a hole in your life now and that itself does not vanish, but if you let it life can build around that hole and over time the hole becomes proportionately smaller. Still there but it sucks less and less attention and energy from you.

There is a Dr Suess quote doing the rounds at the moment:
“Sometimes you will never know the value of a moment, until it becomes a memory.” Having MS means we learn to appreciate the value of a moment when we are still in it. So give yourself some time to take stock and process this diagnosis, then get out there, live your best life and revel in the fact that you know that is what you are doing!


em-nuss
1 month ago

Hi Georgia, I’m 19 and would love to chat with you! I went through very similar emotions when I was diagnosed, with no one my age really understanding, but thankfully I’ve been able to adapt and even educate people around me :). I also have some ideas regarding diet if you’d like to talk about that! I’m also on Ocrevus by the way!!


rel12
1 month ago

Hey @georgia_roberts !

It’s such common things to be thinking about! I was diagnosed at 26 and in the start of a new career after graduation. I’ve been more of the party girl since a young age so for me it felt like there was a total stop on my fun life. It’s not true!! Of course there were some adjustments and still learning about ways to improve with MS. Everyone is different and it’s all about your attitude and approach on it and life. I totally get how no one around may understand what we may go through or you are just there wondering about the future at all times haha Stay positive and def reach out to me if you have questions!


potter
1 month ago

I wasn’t diagnosed until I was 55 but I had symptoms since my early 20’s. I am 67 now, I still walk! Not as far as I would like and I don’t use a cane or any assistant device yet. When I was diagnosed I started on the best DMT I could get. I think all of the advancements they are making with MS treatments will really make a difference in your lifetime. Look at all the success they have had with the treatment of HIV. I would definitely get your Vit D level checked, my was so low it took a year of increasing the dose until it got to the normal level. Potter


lorag
1 month ago

I was diagnosed at 19 first symptom at 16. Diagnosed with RRMS and yes had bad relapses but when i felt better I carried on as normal, I was at the gym working full time had boyfriends went out to pubs drinking smoking travelled the world twice. everything a young girl does.
Just live life as normal and enjoy yourself at the same time look after yourself.
Try not think of what if. If it does happen you can deal with it.


pippa87
1 month ago

I always wish that I wasn’t 32 and in this situation. I’m on Ocrevus (which has completely changed my life and feel so normal again) I’m also still doing everything I did before being diagnosed, but even more importantly now to help prevent any disability, Eating well, strength and cardio training which to be honest is good for the body whether you have MS or not.
I do have these thoughts though, I think a strong support system around you, like you guys (thank you all ms shifter’s) friends, bf and family help so much.
The more I stress about something the worse I feel, there’s alot to be said about a positive mind.
As long as I’m doing everything I can to help prevent disability build up then if that day ever comes I will know I did my best.
Sorry for the long one, currently isolating on own 😂
Hope you’re all staying well
X


kateb
1 month ago

@georgia_roberts I have last year been diagnosed, at age 50 but in hindsight have had it for years. After I was diagnosed I remembered that someone once told me that my Grandmother had had MS. The fact that I had forgotten this shows how little it had affected her and she lived to her late 80’s. She can’t have taken any drugs for it as there were none in those days. In fact she thought they had got the diagnosis wrong.
I run, I often hike on Dartmoor , and I have more energy than most people. I do eat a healthyish diet, I don’t drink much alcohol (but this is because I can’t seem to tolerate it) My God mother also has MS and is still walking around age 80, so I personally feel optimistic. I have started Tecfidera, but only as an insurance for the future


ebony_healy
1 month ago

Hi! I’m 22 and was diagnosed last year age 21. I totally get what you’re saying… I have these questions and worries too.

I asked my neurologist if i will end up in a wheelchair and she said obviously no one knows, but people do really well on treatment these days and a lot of people with MS never need a wheelchair. Therefore, i try to not worry about that prospect as i don’t want to worry too much about something that may never happen… but at the same i appreciate my current ability to walk, just in case that does change. But I started Ocrevus in Feb and so far i’m feeling pretty good.

As for the rest, i don’t know many statistics about disease progression and all that… but again i just think it’s such a random disease i don’t find much comfort in looking at stats as i know my body will do what it wants when it wants lol… But i have spoken to people older than me that have gone years without relapsing which is positive. Plus i don’t think current stats about disease progression will reflect us newly diagnosed, because treatments and therapies have improved so much over the last decade or so, and i’m sure will continue to get more promising.

I’m under the impression that diet is super important, and i’ve invested in a couple of books and am going to research into the things i should be eating. I’m also taking 4000 IU vitamin D, and my doctor also said omega 3. There are so many other supplements i’ve been looking into taking so that’s another conversation for my neurologist/ms nurse.

I hope you’re doing ok, and if you ever wanna chat feel free to message me x


wheelrunconflux
1 month ago

I’m 27, a fulltime wheelchair user and I’ve gleaned 2 major things from this experience:

1) MS is vastly, vastly different from everyone and my weird experience of 2 leisons equalling incomplete quadriplegia is incredib;y atypical. My mobility/motor decline has been my major MS symptom (due to both leisons being spinal) and that’s apparently super weird. Tbh, I find it hard sometimes to identify with the diagnosis and feel a lot more attached to the spinal cord injury community because its SO deviant to the seemingly more typical expression/pattern of MS.

2) IF (and its a strong if) using a wheelchair does become part of your life, that’s all it is. It’s not your whole life, its not the end of the world – you just have wheels now. I’ve been a fulltime wheelchair user for over a year, maybe nearing 2 years now and before that was a fulltime crutch user for 3- and its fine. I still go do stuff – completed my MSc using my chair – and generally don’t go around horrifically depressed or angry or whatever about my luck. Some days are down, some are up – but that’s rarely to do with my chair, or beign a quad.

I’m uncertian of my future sure, but not because I’m disabled – I’m uncertain because of job markets, and income and whatever is happening with the world. Being disabled is just another variable, and is far from the end of things.

My symptoms 1st hit at 21, and it took 5 years for me to be diagnosed – I came to terms with disability long before I came to even understand that I fell into the category of MS, so I guess – regardless of what happens (which although no one can predict, seems to statistically [insert some MS FAQ or your choice here] and anecdotally not have a wheelchair anytime soon) it will be fine.


Anonymous
1 month ago

Hello
I’m Saudi Arabian 32 years old women
Daignosed age 17 at highschool The vision went foggy thought my glasses needed to change it started getting worse day by day
went to optirian he said my sight os perfect
Must see neurologest i said yeah im an angry peraon

MS was 100% new to my tribe me family

Met him done mri then let me see little sots on brain o saood oh well haha i recover quixklu from sxars he saod no it moght oncreses we repeate it next year

I saw it got worse still had a lil hope it gets disappear
*crying*
Now not then
Back then my father croed so did mum but they never showed me or told me i have even ms
Untill they brought internet i asked yahoo answer they sais thats multiple sxlerosis i swear i dodnt understand so i saod no way that sounds weird
I got second relapse when i stafyed treatment Rebef after 3 yrs
Was bertigo then i asked mum if its ms and sha said yes while crying
I sasked her because i said the steroid iv again
Which reminded me of optic neurotis

But im fine still walkin n kicking been to uk two yrs study us egypt all with ms living my life to yhe fullest just putchased a fancy dress from ferfetch
Best thng about ms it lets u live

Might gets anyone disabled
But better not to suffer rhinking about it before it might happens because of it happens we suffer before n ever after

Only Allah knows what the eye will see

Execuse my poor english


hayley_criddle
1 month ago

Hi I’m 52 I was diagnosed Oct last year and I’ve just started Tecfidera. What wonderful feedback you have been given particularly from @kateb, I think in her message it reassures you in the future how people can have a disability free future. On the plus side you have been diagnosed early where there are good treatments out there now which there wasn’t before. Keep positive you’ve got this. If you feel like a chat message me any time.

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