Last reply 1 year ago
Newly Diagnosed

Hey there,
I am 22 years old and have just been diagnosed with RRMS. So far, its been a rough road. I had my first flare-up in November ( how the ball got rolling towards my diagnosis) and I was in remission for about a month. Now I have crazy blurriness/ darkness in my left eye and vertigo which makes me feel sick to my stomach almost all day. My neuro put me on steroids which I start tomorrow. My friends have been great about it but I feel sad/anxious all the time. I just don’t know how to open up about how scared I am about the future. I’m single and I worry that no one will want to be with me when they find out I have MS. I also worry about not being able to do the things I enjoy due to to my decreased energy. I made a promise to myself I wouldn’t let MS take over my life but right now, I feel like I’m breaking that promise. Any advice for a new MSer? Thanks everybody!

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tracyd
1 year ago

@sm050
Welcome to MS Fight club 🙂
First rule of MS Fight Club is you fight, whichever way that you are most comfortable with. You pick up your weapon of choice and you so to war against this nonsense 🙂
There are amazing treatments availalbe these days which can halt this MS-shit in its tracks, stop it before it gets bad and that future – well it’s so full of hope and positivity these days because we do have weapons to fight back with now which have really only come to the fore in the last 6-7 years.

You have a friend request, if you need to talk drop me a PM I’m happy to share contact details xxx


joolzmac
1 year ago

Hiya I am new as well to MS and this site!
Welcome you will have good and bad days so I’ve been told! Every day is different as it is before diagnosed with MS. Take care of yourself x


doubleo7hud
1 year ago

Tell ms to suck yer phat one as iv said before it has to live with me not me live with it. Keep fighting and if you need anything just ask I can’t help with money tho I’m fecking skint. Welcome tet party 🎉


stumbler
1 year ago

Hi @sm050 and welcome.

Well, I hope the above comments have improved your mood. MS is no longer the disabling condition that it used to be. It is now a manageable condition.

But, an unexpected diagnosis is a shock to the system, so go easy on yourself and allow yourself time to understand the diagnosis.

The steroids will help your present problems, but your recovery will come over the following 6 – 8 weeks. You do need to try and rest up a bit to allow your body to effect this recovery.

Beware that steroids do come with some immediate, short-term side effects. They can give you a metallic taste, so a supply of mints is recommended. They can also give you an immediate high, but this is followed by the “steroid crash”, where things stabilise.

So, take care and hang around the forum to soak up some of this positivity. And feel free to ask any questions that come to mind.


willglasgow
1 year ago

hey,

the first few days/weeks/months are definitely the hardest. i was diagnosed two years ago and it felt completely life changing, i thought the person i was was gone forever and that my new diagnosis would completely define me. however, over time I’ve learnt that’s complete bullshit. MS is no doubt a massive thing, i still probably think about the fact that I have the weird disease everyday, but it absolutely hasnt made me any different to who i was before. or if it has, the slight changes are probably on the whole good. i’m healthier, i dont smoke anymore, im more open minded and probably a bit more patient with myself and others. being diagnosed with anything forces a certain amount of self reflection, and that’s really healthy.

try and make it thru the first chunk and it will all get better. i totally get the bit about finding a partner. my wife was pregnant when we found out i had MS, i remember having a cry with her and telling her i’d understand if she wanted to leave coz she didnt sign up to have to look after a sick person. well, she didn’t and so far she doesnt have to look after me any more than she did before. anyone worth spending time with won’t care if you have MS.

the diagnosis won’t change you. the sadness and anxiety will pass, but probably also come back from time to time – but remember, ppl who don’t have MS are sad and anxious too. they just don’t have a disease to rack it up against.

finally, enjoy the steroids. i really love them, the slight high mixed with the disappearance of all my symptoms was great and made sitting in hospital far more enjoyable. i remember wanting to lie to my neuro so they’d keep me on them.

take care

wx


sm050
1 year ago

Thanks everybody, it means a lot that’s i’m welcome in this awesome community! Not saying I’m glad to have MS but if it had to be a disease, at least it’s one with amazing support xx 🙂


Anonymous
1 year ago

you don’t have to be bonkers to have MS – but it certainly helps 🙂
wat dus tha rekon @doubleo7hud ?


doubleo7hud
1 year ago

Well @tog1 one does believe it helps if ones cheese has slipped off ones cracker. In my case It did not just slip off I ran over the little crumbaly bastard In a tank, fried the crumbs in a wok and ate them with a nice bottle of chianti fuffff fufff fuffaaaaa

@sm050 My wife was also diagnosed in Novemeber but she (and I) are 45. We also went through a bit of a rollercoaster. We have been following Overcoming MS (you can google it) but there are a number of other programs that are free and easily accessible. It has given us lots of hope. We are also using Tecfidera. Its hard staying hopeful sometimes but like most things it comes in waves. Following a program like OMS has given us a solid plan and approach as a family. We went skiing last month and we werent sure that was going to happen (and not sure it will happen next year) so we are living in the moment day by day.

Do you have a good Dr you are working with? I think thats an important first step, but at the same time I would get familiar with the diease so you feel confident on your options.

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