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whompwhomp

832d

i am a teenager with ms, which apparently isn’t very common. it’s really hard to find people who get it yknow? i’ve been doing stuff with this group called oscar the ms monkey (they’re awesome) but i was wondering if anyone has heard about any other groups for kids/teens/young adults with ms?

Top reply
    • Joseph223

      826d

      I’m 20

    • Joseph223

      826d

      I’m 20

    • Aya

      828d

      I was diagnosed at 17! I am 25 now, but I can understand how much of a huge shift in your life it could be! I thought I'd never have a "normal" life. I had 3 flares in under 6 months and it took 4 doctors before anyone though "hmm thats odd". You can have a normal life, it may feel daunting now, but it gets easier with time.

    • msmmr

      829d

      Well it started with almost losing my vision in my right eye and having to have my mom help me walk so I wouldn’t fall over. Went to the hospital and so many MRIs and a lumbar puncture. I have two lesions on my cerebellum and some lesions on my spine which just happened a few months ago. I’m currently on dimethyl fumarate. I was 28 when I got diagnosed. Here lately I’ve had lots of days where I wake up dizzy and one morning I had to call my mom from the other room to help me get out of bed to go pee. I’ve had bowel issues along, aka not making it to the bathroom in time. It’s been rough because I can’t seem to find the balance of wanting to get stuff done and cleaning but then the next day I’m worthless and can barely move.

    • whompwhomp

      830d

      but yeah there’s hardly any groups for young adults/teens/kids with ms. ig theres of course not as many but it’s definitely hard

    • whompwhomp

      830d

      @ChloeWorm my whole thing was i was getting an mri for my sudden onset of tics (i was diagnosed with TS about a year ago) and some lesions popped up. they caught my ms VERY early, i had a tentative diagnosis of ms until last week when my last scan came in. since then it’s only really been acute symptoms, lots of fatigue. i was put on copaxone for a bit, but it wasn’t working as well as we had wanted so we’re gonna have to do some hunting i think.

    • Bbdoll_screams

      832d

      I haven’t had any luck on finding groups of teenagers with ms, I was diagnosed last year at 17

    • Wheeliedemylinayed

      832d

      Hey! Do you use Instagram? There’s a woman there who is now older than you but developed ms as an adolescent https://instagram.com/crystalbedoya?utm_medium=copy_link Also I volunteer for a really cool program called Peer Connections https://www.nationalmssociety.org/Resources-Support/Find-Support/Connect-with-Peers-One-on-One I doubt they have any teens, I’m young for a volunteer at 34 but still might be worth asking. Having friends who know your struggles is very important! I really hope you find some and would be happy to chat more if those resources don’t pan out.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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