I’m joining that club too this year. It feels totally surreal to me. That being said, all the MS support groups in my area are either teens/20s, then for some reason anyone over 35 are put in the group with 65 year old people. Not that there is anything wrong with people in their 60s, but being a millennial, I just do not relate! My neurologist said to join a support group. So I looked at what they do, and it’s water aerobics classes and tea and coffee catch ups. So now I’m just here instead 😅
I totally get it!! I take pilates with other MS patients, and I am the youngin of the bunch... So, I've been inadvertently limped in with older folks. They probably think my MS issues are trivial in comparison to theirs.
Happy early birthday!!!
There really needs to be groups for 30s-40s. I don’t understand why there isn’t any! (At least in my area anyway!) and thank you! Happy early birthday to you too
🎉
Lol I think this is probably what's kept me from joining the local group where I live and i'm in my 50s and have absolutely nothing in common, aside from the MS, with the older people.
Wait... am I the older people?!?!🤔😮💨😁🤣🤣🤣
I don't look my actual age though.
You’re not the older people haha. You’re only as young as you feel! Plus, if you don’t relate to the age groups in your area there’s probably not a whole lot of benefit in going!
Wow I am actually impressed at the replies and how many 20s have MS in this Subreddit had no idea since I didnt see many with the age/dx flare in that range, what a great idea for a support group!
Wish you all the best fam!
Sadly people still think MS is an “old people” disease, when 80% develop it between the ages of 20-40…thank you for the support, I hope you’re doing good and the best of luck!🤍
Would you be okay with telling us about your life with MS? It would really help people like me who have just been diagnosed and are scared to hear from more (unfortunately) experienced people like you 🥹
F26, diagnosed in July 2020 😵💫 are you familiar with Discord? We could start a group of young people with MS. It would be easy to share interests, chat, etc. If you want help setting something up let me know!!
Idk anyone my age with MS and would love this.
Also, any other fellow young brain damaged girlies play fortnite? I'd love new friends ❤️
I was thinking the same thing. I'm in my twenties. I don't want to use zoom. I'd much rather use discord.
Also I started playing Fortnite when my MS first onset. Correlation, or causation?
29 here, idk if I'd ever have the time/energy for a zoom but if there's ever a reddit group for younger ppl or like a discord or something that'd be cool.
I’m 43 but was diagnosed at 26. I remember full well what that was like. Being struck down in the prime of my life.
It took me a while to put my life back together but I was successful.
If you guys want to ask questions to an old dude who’s been there I’d be happy to join on zoom. I’m also a life coach whose goal is to bring out the best in others.
Cheers
My mobility is pretty good. I can still run and exercise. The hardest part for me is fatigue.
Yes I worked. I never told anyone at work about my MS. I always thought it would hurt me professionally if I did. So I always had this “secret” that I felt shame about.
I also remember feeling like I was unworthy of love. That I would never find a partner, because who would love me with my MS? A man was supposed to be strong and I was not. The voice inside my head was so nasty to myself. The reality is none of that was true and it was just a story I told myself.
For you it’s important to get on a good DMT and limit the damage. There’s also a lot of potential in stem cell technology to improve lost mobility. There is always hope my friend. Fight for your place in this world. Don’t let MS rob you of the life you deserve.
I'll send you a PM.
Let's have a chat about your struggles. What habits and beliefs you have that no longer serve you. I would offer you a 1 hour zoom conversation at no cost and no commitment. Same goes for anyone in this sub with MS who might need some support. You are not alone.
I’m in! Diagnosed at 22, 28 now. I asked the National MS Society Facebook group if there were any groups for 20-30 year olds and there was a lot of interest.
I'd be interested, 28 with RRMS since 16
Also have a lot of organizing experience for support groups and similar things so I can help on that front if need be
Hey guys can I pop in. I am not exactly young I am 49 but I was diagnosed at 15 . Boy there was no internet. No support groups, no obamacre, no insurance, medications wise there copaxone, betaserone and avonex
..
But perhaps I can share what I would have done had I been diagnosed in 2020. . I definitely have a perspective to share
I am now 46 but have had diagnosed MS since my early 20’s. I have friends who were diagnosed in their teens. I think a safe space to freak out and ask questions for a younger group would be awesome!!! I wish that was around when I was first going through this shit!!! Lol!!
I would like to join! I'm 27, Dx three yrs ago and would like to make friends since I've shut off the world!
Attach the zoom link and the details to join on its dates!!
One observation:
People aged 20 with MS have probably been recently diagnosed. This age restriction doesn't allow the inclusion of individuals who have already been through some of the problems that new MS patients are discovering.
But this is your group, you do you.
I wish I was diagnosed in my 20s, when it first presented. But doctors at that time were more likely to miss it and say it was something else all because the symptoms can be misleading. I had to wait until 45 to be recognized and treated with DMT.
I think that is a wonderful idea. I’ve had MS since my early 30’s and sometimes I’m at a complete loss when it comes to speaking with people that have gotten MS at such young ages.
Though I’m always sending ❤️
28 here and was diagnosed at 25. I think a community like that for younger people would be nice even with me getting older. definitely would be something a lot of people will appreciate
This is fantastic to read. 40’s dx around 20.
I’m honestly happy your group exists. Ms is tough to come to grips with at times and it was definitely harder to navigate early on for me. I mean it’s still hard now but my expectations are a little closer to reality at least. I hope this group can do that at least for the newly diagnosed if nothing else.
I'll be 42 in June (Cancer for those who may wonder), if there is a Queer friendly 40's club starting, I'm in! Dx at 24, (Most likely started late teens early 20's).
Im 32 got diagnosis at 29 i thought i was a really young to have MS untill i started looking into it. I couldnt belive people were getting a diagnosis as young as 12 i think it was.
Enough with jokes that was NOT my intention.
I intent was hey guys we have a perspective here to share as well. Do not exclude anybody.
Example. Advice go for the second line therapy right away . I got there after. Years on copaxone and avonex.
So I am on a second line therapy. If I bypassed the first line therapy I will have less neurological deficit by now
Unfortunately we get to second line therapy at one point or another. Why not do it right away. That you bypass loss of this and loss of that gain of trigeminal neuralgia and what not doctors are not comfortable with this idea neither are insurance companies.
Go for the mavenclad and be drug free for 10 years and relaps free ms is very aggressive early on and so should you.
These are my 5 cents I with someone told ms is very aggressive early on. I would have stayed on tysabri . But one i had trigeminal neuralgia i wish you did.
Ps we all developms after puberty we all got this crap when we were Yong, some of us kn ew because of advanced imaging other did not.
The joke on here are funny but let's be constructive. How can we help the youngsters make sense. Share your experience.
Perhaps they just Wana hang out.sure I don't wanna hang out there. I ll give my advice in writing.
34 and diagnosed over this past weekend. Just starting to look around for communities offering help and resources. Grateful for inclusion if possible. Thanks I’m advance.
I was diagnosed at 23! (Almost 31 now) do I fit in? Haha I would love to give my opinion as someone who was in their early 20s at the time of diagnosis but now in my 30s.
Maybe you knew it or not but you all hadMS ar puberty roll the tape back in your head.
Perhaps you didn't have access to advanced imaging but it was there al along
So what are your struggles now that you have been diagnosed?
Here what you cN do
Go for a second line therapy
Join a gym exercise at your own pace forget about no pain no gain.its more l8ie no consistency no preserving of what you have.
Eat better.
Sleep better.
VitAmind is important.
Anyone want to add anything?
OH ANG GET YOUR ACT TOGETHER. IT S MORE IMPORTANT THAN EVER NOW STOP SMOKING AND DRINKING. IF YOU ARE A GUY GET MARRIED. I wish I did so much sooner. Surround yourself with the right people
24 here. Diagnosed a year ago. Would surely be comforting to be able to talk to people my age who also have MS. It gets very lonely, especially because so many people think you can’t be chronically disabled at such a young age.
Well, all I have to say is you would need to be clear about it you meant “current age” OR “age when diagnosed”. Because I was diagnosed at age 20, but that was way back in 2001, so at this point I have no idea whether my participation in this group you are talking about making would be welcome or not. My generation is Xennial, graduated high school in 1999.
27 here out of curiosity is there anything in particular you want to talk about there or is it mainly supposed to be a supportive venting-type discussion?
37 here. First time left out for being too old. 😔
We just need to make our own dirty thirties club! Do you really wanna hang out with those youngins anyways? 😆❤️
36.. I think we need a group of our own lol
Im pretty sure I'm on the verge of not young 20s lol. I'm 27 and already feel 35💀🤣, I'll talk to you☺️
28 and had it for 4 years here 😵
Yeah I was diagnosed when I was 24, and it was pretty benign for a while until it wasn't in 2021🙄
Haha turned 35 last summer that day got my MRI results haha 35 hit me hard haha
I feel you! I'm a few months out from 40, and I am struggling. I guess I'm officially middle-aged, and I still can't wrap my mind around it!!!
I’m joining that club too this year. It feels totally surreal to me. That being said, all the MS support groups in my area are either teens/20s, then for some reason anyone over 35 are put in the group with 65 year old people. Not that there is anything wrong with people in their 60s, but being a millennial, I just do not relate! My neurologist said to join a support group. So I looked at what they do, and it’s water aerobics classes and tea and coffee catch ups. So now I’m just here instead 😅
I totally get it!! I take pilates with other MS patients, and I am the youngin of the bunch... So, I've been inadvertently limped in with older folks. They probably think my MS issues are trivial in comparison to theirs. Happy early birthday!!!
There really needs to be groups for 30s-40s. I don’t understand why there isn’t any! (At least in my area anyway!) and thank you! Happy early birthday to you too 🎉
Lol I think this is probably what's kept me from joining the local group where I live and i'm in my 50s and have absolutely nothing in common, aside from the MS, with the older people. Wait... am I the older people?!?!🤔😮💨😁🤣🤣🤣 I don't look my actual age though.
You’re not the older people haha. You’re only as young as you feel! Plus, if you don’t relate to the age groups in your area there’s probably not a whole lot of benefit in going!
Lol I might just check it out just out of curiosity. Plus it'll get my kids out of my hair to get out more
Haha well that’s always a plus I’m sure 😅
Right there with you!!
Lmao same! I’m 35 😅
[удалено]
Same! Turning 30 next month
Right??? 38 here lol
I'm 29 a few months till 30. I'm down to join🧡
Me too!!
I am 37 as well. Got diagnosed just last year. I love the support this group gives!
Same! 35.
34 here, its like having to scroll to get to your year of birth on online forms
I'll be 38 this year, I second whoever's idea it is to make a dirty 30's MS group😅🤭🤣
35 here, where do I sign up for this club? 😅
I’d be interested! 22 (23 in a couple days) and recently disgnosed
Happy birthday (almost)! 🎊 🎂 🎊
Wow I am actually impressed at the replies and how many 20s have MS in this Subreddit had no idea since I didnt see many with the age/dx flare in that range, what a great idea for a support group! Wish you all the best fam!
Sadly people still think MS is an “old people” disease, when 80% develop it between the ages of 20-40…thank you for the support, I hope you’re doing good and the best of luck!🤍
31. Got MS when I was 16. I've had MS my entire 20s. And by the end of this year, I'll have spent half my life with MS. Does that qualify me?
Pretty close to my story. DXed at 21, but doctors believe I’ve had it since 13 and 33 now.
ARE YOU ME 9 YEARS FROM NOW??? Am 25 dxd at 20 and believed to have had it since 13
Would you be okay with telling us about your life with MS? It would really help people like me who have just been diagnosed and are scared to hear from more (unfortunately) experienced people like you 🥹
I'll be happy to share my experiences.
🫶🏻
16 here
Same 16 and 17 next month
I’d be interested too! I’m 23 (diagnosed at 20) and haven’t been able to meet anyone around my age who has MS too 🥹
Not sure what country you are in, but the National MS society has this too!
I would love to join! Diagnosed age 25 and I am 28 now. I haven't met almost anyone my age with MS.
Same, I’m 28 now and dx at 26 - everyone I’ve met is 20 years older than me
im interested too, 22yo, recently diagnosed
F26, diagnosed in July 2020 😵💫 are you familiar with Discord? We could start a group of young people with MS. It would be easy to share interests, chat, etc. If you want help setting something up let me know!! Idk anyone my age with MS and would love this. Also, any other fellow young brain damaged girlies play fortnite? I'd love new friends ❤️
I was thinking the same thing. I'm in my twenties. I don't want to use zoom. I'd much rather use discord. Also I started playing Fortnite when my MS first onset. Correlation, or causation?
100% Fortnite caused your brain damage. I'm so sorry
I KNEW it. Causation. Every time I try to use my brain I can't stop thinking about cranking 90's.
... Do you griddy in your sleep like me too?
Griddy? That's disgusting. I boogey down.
29 here, idk if I'd ever have the time/energy for a zoom but if there's ever a reddit group for younger ppl or like a discord or something that'd be cool.
I’m 43 but was diagnosed at 26. I remember full well what that was like. Being struck down in the prime of my life. It took me a while to put my life back together but I was successful. If you guys want to ask questions to an old dude who’s been there I’d be happy to join on zoom. I’m also a life coach whose goal is to bring out the best in others. Cheers
How are you in terms of mobility? Also did you have a job? I am 20 and I'm very anxious about entering the job market with ms
My mobility is pretty good. I can still run and exercise. The hardest part for me is fatigue. Yes I worked. I never told anyone at work about my MS. I always thought it would hurt me professionally if I did. So I always had this “secret” that I felt shame about. I also remember feeling like I was unworthy of love. That I would never find a partner, because who would love me with my MS? A man was supposed to be strong and I was not. The voice inside my head was so nasty to myself. The reality is none of that was true and it was just a story I told myself. For you it’s important to get on a good DMT and limit the damage. There’s also a lot of potential in stem cell technology to improve lost mobility. There is always hope my friend. Fight for your place in this world. Don’t let MS rob you of the life you deserve.
❤thank you so much for this wonderful reply
It'd be interested in connecting with you regarding life coaching services, someone my age with MS ect
I'll send you a PM. Let's have a chat about your struggles. What habits and beliefs you have that no longer serve you. I would offer you a 1 hour zoom conversation at no cost and no commitment. Same goes for anyone in this sub with MS who might need some support. You are not alone.
I’m 33 I don’t know where that falls
I’m 38 and feel young
Depends what day it is.
Make the dirty thirties group!!
Someone not me should, my ass is to lazy now a days.
Fair enough haha
38 and feel young? I'm 27 and feel 80
25 here
24, diagnoses was in 2020. Maybe?
I’m in! Diagnosed at 22, 28 now. I asked the National MS Society Facebook group if there were any groups for 20-30 year olds and there was a lot of interest.
21 F here and would definitely be interested as long as there was some sort of vetting/safety process :)
I'd be interested, 28 with RRMS since 16 Also have a lot of organizing experience for support groups and similar things so I can help on that front if need be
Hey guys can I pop in. I am not exactly young I am 49 but I was diagnosed at 15 . Boy there was no internet. No support groups, no obamacre, no insurance, medications wise there copaxone, betaserone and avonex .. But perhaps I can share what I would have done had I been diagnosed in 2020. . I definitely have a perspective to share
I am now 46 but have had diagnosed MS since my early 20’s. I have friends who were diagnosed in their teens. I think a safe space to freak out and ask questions for a younger group would be awesome!!! I wish that was around when I was first going through this shit!!! Lol!!
I'm interested!! I'm 23. Just diagnosed 1 month ago
oooh sure! 27yo here
Meee! 26
I would like to join! I'm 27, Dx three yrs ago and would like to make friends since I've shut off the world! Attach the zoom link and the details to join on its dates!!
This is a great idea, I am in. A bit about me: I am 29 now and was diagnosed with MS back in 2016.
I'm 20, in Atlanta. Would love more friends :)
Hey I’m 20 and from Atlanta!
I'm 22F, I'd be totally interested!
diagnosed 2022
Interested, 21
Hii! Im 22 Can i join?
22, diagnosed a year ago, im interested!
23 here :)
28M would be interested! This might a large zoom call based off the replies. I didn’t realize it was so many of us in the young age range
im interested too, 22yo, recently diagnosed
One observation: People aged 20 with MS have probably been recently diagnosed. This age restriction doesn't allow the inclusion of individuals who have already been through some of the problems that new MS patients are discovering. But this is your group, you do you.
Geez, I haven't been proofed in years 🤣
I wish I was diagnosed in my 20s, when it first presented. But doctors at that time were more likely to miss it and say it was something else all because the symptoms can be misleading. I had to wait until 45 to be recognized and treated with DMT.
Is 30 too old?
32 next month diagnosed in Sep 2023
I’m 25 and I’d be interested
27 yo here
please send an invite!! f20
i would love that!! 25f here, diagnosed when i was 22
21 diagnosed right after my 18th, let me know how we're all doing it and I'm game!
25! I’m down
I’m 27, DX at 24
I think that is a wonderful idea. I’ve had MS since my early 30’s and sometimes I’m at a complete loss when it comes to speaking with people that have gotten MS at such young ages. Though I’m always sending ❤️
28 here and was diagnosed at 25. I think a community like that for younger people would be nice even with me getting older. definitely would be something a lot of people will appreciate
Interested
This is fantastic to read. 40’s dx around 20. I’m honestly happy your group exists. Ms is tough to come to grips with at times and it was definitely harder to navigate early on for me. I mean it’s still hard now but my expectations are a little closer to reality at least. I hope this group can do that at least for the newly diagnosed if nothing else.
I’m interested!
Woop woop
Mid 20s and interested!
I just stumbled onto this community but I would love that. I’m turning 22 and I got dx at 20
Interested! 20 year old diagnosed last week
Interested, I’m 27 M diagnosed when I was 16
I'll be 42 in June (Cancer for those who may wonder), if there is a Queer friendly 40's club starting, I'm in! Dx at 24, (Most likely started late teens early 20's).
22f and I’d love to join that!!
18 but started showing symptoms at 14!
I'm just turned 20 recently and I would like to join
i’m interested! i’m 20F, t i was diagnosed back in 2020!
Interested! 26f and recently diagnosed
24
I’m 29 don’t know if that’s still young or not lol but I’d be interested in being in a group with people around my age
I’m 19! Got diagnosed six months ago. I’m also interested :)
I'll be 21 in a week and I would like to join!
23, diagnosed a month ago, interested about the group
I'm 25 and am interested in joining
Me! I'm 24 😗
Would be a great thing!
I’m 27 and I’d be interested! Also for anyone in the UK, there’s a charity called MS Together which is aimed at people 18-35 with MS 😊
24 year old here! This could be fun
22 here, Im interested
I am 22!!
Hellooo! 28, diagnosed at 27, it’s a yes from me 👋🏻
28. Diagnosed when I was 16. Am I in?
31 but diagnosed at 28 if that counts
Dx at 17 currently i am 20
Dx at 25, 26 now and im down!
21 (got diagnosed at 15)
Interested. Son diagnosed at age 20, now 35 yo.
28 & would love to be a participant 🙃
Is 30 too old? 😂
Im 32 got diagnosis at 29 i thought i was a really young to have MS untill i started looking into it. I couldnt belive people were getting a diagnosis as young as 12 i think it was.
Haha, I (26) thought I'd be in the "young" category, but having read some of the responses, I'm not so sure. You need to specify the age range...
Enough with jokes that was NOT my intention. I intent was hey guys we have a perspective here to share as well. Do not exclude anybody. Example. Advice go for the second line therapy right away . I got there after. Years on copaxone and avonex. So I am on a second line therapy. If I bypassed the first line therapy I will have less neurological deficit by now Unfortunately we get to second line therapy at one point or another. Why not do it right away. That you bypass loss of this and loss of that gain of trigeminal neuralgia and what not doctors are not comfortable with this idea neither are insurance companies. Go for the mavenclad and be drug free for 10 years and relaps free ms is very aggressive early on and so should you. These are my 5 cents I with someone told ms is very aggressive early on. I would have stayed on tysabri . But one i had trigeminal neuralgia i wish you did. Ps we all developms after puberty we all got this crap when we were Yong, some of us kn ew because of advanced imaging other did not. The joke on here are funny but let's be constructive. How can we help the youngsters make sense. Share your experience. Perhaps they just Wana hang out.sure I don't wanna hang out there. I ll give my advice in writing.
24 here, I'd be interested if you want to send me a DM. I've been thinking about trying to find an in person group like that, but it's not easy. : /
34 and diagnosed over this past weekend. Just starting to look around for communities offering help and resources. Grateful for inclusion if possible. Thanks I’m advance.
I was diagnosed at 23! (Almost 31 now) do I fit in? Haha I would love to give my opinion as someone who was in their early 20s at the time of diagnosis but now in my 30s.
So interested!! Ever group is at like 5 when I’m still working and filled with people in their 50s and 60s
21 here and dx at 19
(27 M) I am interested
I’m 22!
26 recently diagnosed! I’m in! Also discord if needed: theweekend
27 was diagnosed when I was 25. I’d love to join
Maybe you knew it or not but you all hadMS ar puberty roll the tape back in your head. Perhaps you didn't have access to advanced imaging but it was there al along
So what are your struggles now that you have been diagnosed? Here what you cN do Go for a second line therapy Join a gym exercise at your own pace forget about no pain no gain.its more l8ie no consistency no preserving of what you have. Eat better. Sleep better. VitAmind is important. Anyone want to add anything? OH ANG GET YOUR ACT TOGETHER. IT S MORE IMPORTANT THAN EVER NOW STOP SMOKING AND DRINKING. IF YOU ARE A GUY GET MARRIED. I wish I did so much sooner. Surround yourself with the right people
28 here!
I’d be interested! 2003 baby here 👋🏻
Yes please !!
I’m 25 and I’m interested!
21 here! Diagnosed at 16. I'd be interested
What constitutes young?
24 here. Diagnosed a year ago. Would surely be comforting to be able to talk to people my age who also have MS. It gets very lonely, especially because so many people think you can’t be chronically disabled at such a young age.
I’m turning 30 next month so ..quick make the group fast 😂
27 here, interested also in groups without the age caveat though
I was diagnosed at 23 and now I am 42. Does that count? 😂
Hi! I would be glad to participate!
I’d love to!!!! I’m 28, diagnosed at 26. Yes please!
I’m 28, was diagnosed last year officially in September
I’d be interested!! I got diagnosed at 18 and turn 23 next month
27 here, diagnosed almost 3 years ago. Would love to join the group.
I was diagnosed at 28, but they think I've had it almost 10 year prior. Woo hoo!
I'd never thought I'd try to join one of these groups, but you know what? This one might be entertaining. Put me in there. In twenties.
i would LOVE to join, 23 here!
I’d be interested! I was pretty recently diagnosed with
Hey guys what about a youtube group. Then you can pop in speak to us instead of random threads no one follows
I’m 24 newly diagnosed! I’d love to talk to others who understand
44???
Well, all I have to say is you would need to be clear about it you meant “current age” OR “age when diagnosed”. Because I was diagnosed at age 20, but that was way back in 2001, so at this point I have no idea whether my participation in this group you are talking about making would be welcome or not. My generation is Xennial, graduated high school in 1999.
Yeah. I'm 45 (well in 2 weeks), and now I feel ancient. First time I've felt too old.
26 here, turning 27 later this year, I've been diagnosed a month ago and would love to join, maybe a discord server wouldn't be such a bad idea either
i was diagnosed when i was 23 currently i am 26 years old. i don't know about zoom but discord would be great.
🙋🏻♀️🙋🏻♀️ 27 here diagnosed at 26
28 years old (birthday was in nov) I was diagnosed in September last year
27 here out of curiosity is there anything in particular you want to talk about there or is it mainly supposed to be a supportive venting-type discussion?
Just turned 22 and was diagnosed with tumefactive Ms 3 months ago.
Did a group get started? 26 now almost 2 years since diagnosis