Last reply 3 months ago
New to the MS world

I’m interested to hear some treatment options and how people are dealing with MS in their daily lives. How their Neurologist treat them. How they thrive within their families. How they cope with depression. Constantly feeling fatigued. I’m just glad to connect with some people that are going though what I am.

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stumbler
3 months ago

Hi @angel_torres and welcome to the world of MS and an enforced journey of self-discovery that you never planned to make. Life is like MS, it’s unpredictable.

You ask some very searching questions, where each individual answer would the title of a complete chapter in its own right in any book of MS.

There’s a range of booklets/brochures/pamphlets, etc on this UK-based webpage :-

https://support.mstrust.org.uk/shop

Follow the “Newly Diagnosed” tag for introductory material.

Hope this helps.


angel_torres
3 months ago

@stumbler thank you so much for your response and resource. I’ve become a member of the national MS society which sent me a nice informational packet with some information and a dvd w some videos. It’s been helpful.

I look forward to hearing what people are doing and the latest advancements in technology and medical updates on how people are taking the next steps in care.

Thanks again for your response. I’ll be sure to look at the website you sent me.


isidora
3 months ago

@angel_torres

Angel,
Nice to meet you- I will be on treatments for two years this coming August..
I’ve come along way over this journey so far, you will have good days and bad days just like everyone else in the world does.
One golden rule to remember, MS doesn’t have you, you have MS.. it’s only a part of you just as Asthma, or any other medical condition is to anyone else.

I used to be afraid and fear my life was nearly over when I was diagnosed at 20 when my life had just started.. but that’s not the truth. I learned my life was just beginning with a different perspective to make me live it to the fullest.

It is not an easy thing to live with, but when life knocks you down you get back up ten times stronger. The way I look at it is, my life has changed in many ways but I can use it to my advantage to go after the things I really want, for me that’s graduating nursing school, traveling and one day having a family.

To answer your question on – Depression, Fatigue, Anxiety and all the other things that we will carry are not easy to combat, but what I personally find helpful to get these ugly things out of my head is not focusing on them: Occupy yourself. Keep busy with things you genuinely enjoy, not leaving time to think about negative things.
For me the gym, hikes, yoga (any active activity) or cooking, music, reading/studying and writing have become my biggest outlets.

Ultimately,
Stay busy focus on what makes you happy and don’t compare your story to others, everyone experiences MS differently.
I am happy to say I’ve been relapse free since I started my medication- Tysabri a monthly infusion that I recently got moved back to q6wks.

If you have any questions about anything at all don’t hesitate to message me.

Best,

Gina


nutshell88
3 months ago

My first decision was try my best not to be helpless
Or give up even to relapses
I was resting with lil actrivuty to regenerate the effected area
My personality since childhool is a bit stubborn
Having ms hurts my pride
I try to never let it beat me or depress me not for long at least

I tried treatments first couple of years but having them hurted my pride also i stopped tgem 9 years this year i began taking gilenya
My family are so caring snd worried about me and my future more than myself

I finished highschool, uni, moved to scotland to study english, returned to my country “ saudi” have a job now evening shift


nutshell88
3 months ago

I dont allow ms to change my daily routine basically

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