elena-zein 10/01/18
Last reply 2 months ago
new bee

hi my name is Elena. i am 13 years old, i recently found out i had RRMS. it’s been kinda hard taking in the whole situation after i spent a whole week at the hospital. i got two lumbar puncture both not successful, but then from the MRI they were 100 percent sure that it was MS. i am taking tecfidera for almost two month now and my side effects have been red spots especially on my face and blurry vision also double vision. my mom gave me advise to see what other MS patients are feeling and to let me know that i am not the only one. i do have amazing people supporting me all the way, and i hope one day they can find the cure that would make every MS patient MS free.

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londonlad
3 months ago

@ elena-zein

thank you for sharing your story here. I am very sorry you have had such a tough time and not been feeling well.

its very understandable you have found it hard. i am much older than you, and i found it super tough and quite a scary time. so its totally expected.

i also had red spot after leaving the hospital, but they were caused by steroids i was given. i am not sure if they could be a side effect of the medication you are on, or whether you may have also have been given steroids. perhaps your mum and you can ask your doctor, if you are able to?

I also had double vision, and this went after a few weeks, and i hope it will for you too.

I am glad you have good support around you, and do hope the cure comes too. Until then, please be assured that there has been a lot of progress already, and the doctors will do their best to provide good medical support.

best wishes,


hels
3 months ago

Hey Elena-Zein!!!

You’re mum is SO RIGHT!! You are most definitely not on your own chicken!!

I’m not on meds but you’ve got youth and time on your side. If you think about it there’s MSers all over the world, think of it like a massive club who help each other.

I just thought I’d say hi and let you know you’re SO NOT on your own!

Hels xx


merfield
3 months ago

Hi @elena-zein, what rotten luck, and you are soooo young too but you are most definitely NOT alone. Age doesn’t matter here on shift, we are all in the same boat giving each other support. Any time you feel the need, just come on here and you’ll be encouraged, made to laugh, find answers, and generally be supported. I would think that with the current medical research going on a cure is a strong possibility in the not too distant future. Let’s hope so…….stay strong and remember YOU ARE NOT ALNE,OR ALONE EVEN. XXX


vixen
3 months ago

Hello @elena-zein, big welcome although I’m sorry you had to join this very special club! You won’t ever be alone here. There are people all over the world so there is usually somebody around! I take Tec too and have been lucky not to have side effects. I always take it in the middle of food and make sure I take. Itwith something fatty, it really helps. Gosh, you are young but there are quite a few young people on her, some are teenagers.

At least you are a young warrior in an age where there are lots of breakthroughs in the world of MS, there are lots of things on the horizon which should hopeful. Take care, and keep posting lovely lady x


seanachai
3 months ago

Hi @elena-zein

Welcome to the club.

I just found out recently too; I know how you feel; your right a lot to take in and I am 40 something years old…age details not important 😉

I have been here a while as I was pretty sure of my diagnosis beforehand and can assure you, you are in a good club…

I know its hard being so young, but you have time on your side and its worth knowing there is lots of treatment choices now to significantly help and I think we all agree they are getting closer to halting it and hopefully a cure is not too far off… you have time on your side…

In the meantime, the club and its members will help and support while we wait for the good news and know you are not alone….


tog2-0
3 months ago

Hi
There are a lot of horror stories, negative posts, & worse case scenarios on here & elsewhere on the internet, but the joy of MS is each & every path is very different, remember to only look at your own situation & as it actually is, not the imaginings or someone else’s version, you are about to realise you are actually the toughest cookie on the block. (even though we don’t always believe it)
Diagnosed over ten years, they had no idea whan it actually started & it hasn’t broken me yet. 😉
threw in an emoji there just to look cool,
ps is your mom pretty? how old? single? I like her, she sounds very sensible.
I know, you post & you’re mum pulls, daughter screams – eeeww!
oh yes! being slightly mad does help 😉
any questions just ask, we’re all here for you.


cammo
3 months ago

@elena-zein you poor girl. Going through this at such a young age would be terrifying for me. You must be a super tough 13 year old. It is hard enough at 37.
I never had blurry vision but I did go blind in both eyes. That was a fun couple of months which led to my diagnosis :-).
Be positive as it’s not that bad. Well it can be pretty rubbish some times but mostly it is ok. There are people out there with worse things in their lives.
I am on Gilenya. I dont have any side effects and no needles which works for me. It seems to be keeping everything stable so far.
Anyway, chin-up.
Cam


tish22
3 months ago

Hey @elena-zein
Welcome to the wondeful site where we all share the same silly little thing..ms. Well we’re all fighters & we can kick ms in the butt. Having support is so important. & support from all of us here too. Chin up & stay strong.

ox


edmontonalberta
3 months ago

@elena-zein

Life is a journey – we all have the same destination. It is the journey that is important…

My sister was diagnosed with polio a year after she was born; the doctors told my Mother to “place her in a home” so she could focus on her 3 children (including me) & her unborn child. Mom refused & never trusted the government again – my sister Denise got her University degree, traveled the world & got married.

At that time, the medical field believed my Mother was wrong; I remember crying in bed as my sister screamed in pain while her muscles were stretched by Mom at night. I can not imagine the agony my Mother went through taking care of her daughter…

Nobody knows their future – including you. Keep a positive attitude; keep living your life. I still play Bridge with my sister 60 years after her diagnosis… 😉


hollylb10
3 months ago

You are NEVER alone, please don’t feel that way ever! As everyone else has said there are MSers all over the world, you have found the right place. But please don’t feel like you have to resign yourself to MS, there are so many positive stories out there. I would recommend looking here https://overcomingms.org xx


elena-zein
2 months ago

hello everyone, thanks to each and everyone of you for supporting and encouraging me,
everything is going great, some flare ups here and there, but i feel positive all the time
thank you all, i really appreciate each and everyone of you, you guys made me feel like a hero.


mmhhpp
2 months ago

Hi @elena-zein

Sorry to hear you have ms being so young. My gut feeling is that those who begin ms when young do so much better. My friend was 18 when diagnosed and she turns 40 this year! She had two children and she is working and doing a phD. No one can predict the outcome but you need to be possitive and strong. You can find nice people here . Take care xxxx


fingersandtoes
2 months ago

You poor thing, having to go through two lumbar punctures when they could have just done an MRI. I’m guessing they didn’t think of MS first as you are younger than most people when they first get symptoms.

My doctor is full of confidence about the future – there are huge medical advances all the time and it’s certainly an exciting field for her to be in.

I recently started Tecfidera too. I like it a lot – much easier than fussing about with needles. Red spots on your skin – could that be what they call “flushing”? If so those kind of side effects are meant to stop after the first few months. It’s just your body getting used to it. Try to eat a bit more before you take your pill and a bit after. Use it as an excuse to have snacks – protein bars, chocolate etc!

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