Hello! 25(F) new diagnosis.

Welcome and introductions
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Hi all,

Not really sure how to start…
My name is Maya, I’m 25 and recently been diagnosed with RRMS. I’ve had flare ups for the last two years and drs have suspected it to be MS for one year, and now I’m doing all the work up to start my first DMT.

I work in the medical field and am very realistic, so from the get go I was pretty convinced it was MS. Meaning I’ve had lost of time to try and process it but not sure how well that’s actually gone. Most of the time I think I’m fine and just get on with my life and then it sinks in. I don’t think I’ve fully accepted that my life is going to and already is changing. I’m trying to do everything as normal but with my MS being highly active it’s hard both physically and mentally.

I am in full time work and I study. Since a teenager I’ve been highly active and motivated. I would weight-lift 4-5 times per week, leave the house on all days off to walk run errands, do hobbies such as cooking etc. But for the last two years everything has gotten harder. I haven’t been weight lifting (initially due to my back and now MS) for two years, I’ve tried but Im so disappointed by how weak and uncoordinated I am. It’s so disheartening and makes me angry, when I see all the other fit 20s year old girls I just wish I was be one of them. I switched to swimming which I love but again I’m not making progress like I want. I still like my job and can do the 12.5h shifts fine, but often the day after I’m so fatigued I can’t stand or walk for long and don’t leave the house. I used to be so bright and didn’t struggle academically which isn’t the case anymore, I need extensions for everything and still struggle.

I am only 25 but definitely don’t feel it. I age a partner and friend which are supportive but I feel quite lonely. I wish I could talk to someone who understands and make some friends. I don’t know anyone my age or in similar circumstance with MS and when I tell others all I generally hear is “but you’re so young”. It scares me to think about the future, I had such high aspirations but now I don’t know what actually feasible.

I hope you are all doing well and managing ok. Thank you for taking time to read my story.

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You probably don’t need me to tell you that the modern b cell blocker drugs which have been available for the last couple of years including octevus and kaesempta are brilliant they start working in weeks and have shown approximately 70% relapse reduction during their trial periods so I’d say if you have relapsing Ms your future is relatively bright compared to if you’d have got it say 20 years ago

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I have read a bit about the different DMTs but I unfortunately also have history of colitis. No formal diagnosis of UC or crohns but I was seriously ill and hospitalised due to a flare up once. Because of this my neurologist said I wouldn’t be allowed some DMTs. I can’t find a solid list online with what ones exactly but from my understanding kesimpta and other hard hitting DMTs are out of the question? I asked my nurse if she could let me know what ones I can have so I can read more about them but she hasn’t got back to me yet.

Would love to hear if you’ve tried any DMTs and your experience if you’re comfortable sharing.

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It might be worth taking a look at Shift.ms, as they tend to have a younger membership. You can also check a map of MSers in your area.

Shift.ms - Your MS Community

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That is super helpful! Thank you so much x

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Hi Maya, I just saw this post and felt like I related in some ways,
I recently got diagnosed with MS i’ve been having tests since July but recently got my official diagnosis and I am 22, I feel like when it’s so sudden it’s so easy to try and push it aside and try to ignore it, but in reality it is something that is a struggle daily so be kind to yourself, i’m glad you have support because it is so important, i’m here if you ever would like to chat.

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