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18, confused, scared please help

Hi there, thanks for reading my post. I was diagnosed with RRMS 3 week ago and have been left feeling confused about what’s to come next. I had a really bad episode which lasted 2 months, it got worse within that time then better with new symptoms popping up within that timeit started with me walking like I was drunk, couldn’t feel the left half of my face including my tongue, double vision, slow thinking, vomiting, nystagmus (which I didn’t know I had only until after I was diagnosed) and weakness on my left side of my body. I didn’t know what was happening to me and assumed it was side effects from an antidepressant which I stopped taking and three weeks later I was still left with these strange things. I knew their was something wrong after that. My family didn’t believe me at all and I was called an attention seeker, lazy and blah blah blah. No body knew what I was going through and just to get off the streets away from the cold when I was forced to go to college or to go out in general I put myself in dangerous situations just so I could sit down without having to embarrass myself walking in to things and being sick and not being able to see. I went to the doctors and she knew something but I said it must be the antidepressant but she still seem concerned I had to go back again after a rash developed from being to itchy everywhere and she tested my eyes and that’s when she sent me to hospital where I was admitted for 11days. Had the who MRI’s and CT scan as well as a lumbar puncture. I was told by a doctor that I have ms and if I wanted to know what it was to go online and have a look and to write down questions I wanted to ask, then another doctor came in but he was a lot nicer after I had my formal diagnosis by a neurologist. It never sank in much as I didn’t know much about it. Now I’ve done research by myself and it’s scared me… I’m scared for the future, the injections, progression… Basically everything. After I was diagnosed my parents finally understood and apologised and my mum took the news pretty hard. But I dont want to show it but I’m so angry at especially my mum for not believing me at the start and for forcing me to go out to go to college which I was in the verge of being kicked out of because i physically couldn’t go and shouting at me to physically go out and hand out cv’s which I couldn’t do. I couldn’t even go to college. Somedays I would sit on a stairwell in our apartment building from 9 am till 7pm to make it look like I was going to college just so arguments could be avoided. Or if get someone I barely knew to pick me up in a car and sit in their house. The only person that was there for me truly was my brother. My house is stressful with loads of arguments daily about money and me not making my mum proud, but it calmed since the diagnoses but its still fresh. I’m scared it will go back to the same way as mentally and physically I can’t take this no more in my life. I was meant to move out on the day of my admission to hospital but had to call my mental health team to cancel. Even with this situAtion caused stress at home, how I’m hurting my family by moving out how my dad will loose his money and maybe our flat and it will all be my fault. The reasons I was moving out was because the feuds in my house worsened my depression.since being diagnosed with ms I’ve lost the only 3 friends I had due to not being there and in general not caring and that hurt. It was an eye opener to see who cares for me and who doesn’t. That’s the only thing I’m thankful to ms for. I haven’t seen an ms nurse yet or started on injections and haven’t had any in person advice or explanation from any health care professionals. I feel like they’ve left me to my own devices to deteriorate. I really would like some support from anyone with ms, any advice, literally anything to do with ms like how to live, what to avoid, how to get through episodes, your experiences… Anything please and thank you so much.

Hi Rema, you sound so sad :frowning: The time after diagnosis can be a horrible and frightening time. I think you have the right idea to try and sort life aside from MS out first.

Find out who your MS nurse is and get in touch, you can talk to them on the phone or make an appointment to see them, or your GP might be able to help. After I was diagnosed I started going to my local MS Therapy Centre, is there one near you? YOu can get loads of therapies there but it is also great for talking to people in the same position. Don’t be scared, everyone at mine was lovely, there were more young people there than I expected too.

It doesn’t sound like your family are being very supportive just now, and thats not good for your health. If you feel you can I would look in to moving out again.

With regard to MS there aren’t really any right answers. Try to stay healthy and active, and ASK for help any time you need it, from friends or from medical people, they are there to help.

This is a good board for chatting and there is also there is a website called shift.ms which is for young people and a Facebook page called Ladies With Lesions which has loads of supportive chat,.

Take care of yourself xxx

Hi Rema

You’ve certainly got a lot to deal with.

Have you thought about giving the MS Society help line a ring on 0808 800 8000? They can give you some practical advice and also provide a friendly ear for you to talk to.

Good Luck! I think the hardest time is just after diagnosis and it takes a while to come to terms with it all.

Anne x

Hi there, aww, i really feel for you. MS is hard enough to deal with on it’s own, without adding family issues on top. The first few months after diagnosis are always the hardest, and are bound to bring up lots of questions and worries about the future. The best bit of advice i can give you is not to worry about the future because MS is a subjective and unpredictable illlness and it affects everyone diffferently. You don’t know what the future willl bring until it happens. It may not be as bad as you think. If you want to chat, please feel free to message me, love Bex xxx

hi Rema, i would just reiterate what everyone else has said. i was diagnosed with benign ms in 2010 but had a major relapse at Christmas - im still off work now as a result! so i went from “forget about it and carry on as normal” to RRMS overnight! i give myself weekly injections - which i havemt gotten used to yet but they arent so bad! i am on avonex so its weekly and a pen type thing that i put to my leg and click the top! i agree its a very scary diagnosis to get amd you very quickly learn who your true friends are but i may actually make some new friends because of ms!!

Hi rema

we’re all here for you hun

life doesnt end with a diagnosis but it gets harder.

don’t worry about injections, tell yourself that you are doing them to give yourself a better chance of avoiding those nasty relapses.

i’m shocked that you were told you had it and left on your own to work out what to do next.

you should have been referred to an ms specialist consultant neuro and an ms nurse too.

they will tell you if you are able to start DMDs.

now what you can start doing is planning:-

which dmd you would like to try

how you can make changes to help yourself (eat healthily, exercise but don’t overdo it)

get advice on your home situation

ask for a referral to a neuro physio to help with your mobility

join an ms therapy centre where you can meet other people with ms and try all sorts of therapies

join your local ms society for the same reason

plan yourself a treat, doesnt have to be expensive just have something to look forward to

honestly you will cope, you will have friends, you will have a life!

(((((hugs)))))

carole x

Hi Rema…

You’ve been given great advice on here… I will only add that there is LOADS of research going on into MS all over the world. Not only are new treatments coming along but they are even saying a cure is on the horizon.

I am ancient (60 this year!) but you are young enough not only to be able to make use of the new treatments as they come along but also to be still young when the cure comes along! (ok you will be in your 20s or maybe even 30s which seems old to you… but believe me it’s still young!).

The other thing to remember is that people with MS still do everything or most of the things that everyone else does… work, drive, have sex, have babies, travel, drink, party… etc etc etc.

MS changes your life but it is not the end of your life. Far from it!

Takes a long while to get your head round all this… but you’ll get there & after a while it won’t be so scary. Promise!!!

Pat xx

Hi, just sending love and hugs.

You are so young to be saddled with this rotten illness.

it is at a time when you need your family and friends to support you. But if they`ve not been what you need, then get help elsewhere.

here we can offer support and advice.

An MS nurse will also be invaluable.

Hang on in there hun.

luv Pollx

Hi Rema, First of all, very sorry to hear u got this s**t illness. It was just before i turned 18 I got diagnosed so close to ur age. Can’t really say one thing to make you feel better to be honest as I believe every1 deals with ms differently and you will hopefully find ur way soon. You will have ups and downs with it, but I try to focus on the good things I can do and use my ms as a positive to prove ppl wrong and show them I may have a disability but I am just as gd if not better than u. I like to think i stick two fingers up to them in a sense. As for ur so called friends leaving u, sorry to sound harsh but their not friends or else they’d be there for you. I have only been diagnosed for nearly 4 years now and in my limited experiences I have found that you need to put yourself first and do things that will be gd for u. This is hard for me but it is the main thing I think as no1 will do it for you. Anyway I can talk for England so will shut up now, but hope you feel better soon and You can always message me if you want a chat Take care x

Hey Rema

I am sorry to hear that you are having such a tough time of it. It will take time to get your head around a diagnosis of MS (hang it all, it took me 4 years and I got diagnosed when I was 34!). It can be very difficult for family to believe that there is something wrong with you and when you are diagnosed they react like yours did. As for your future, MS doesn’t mean that you have to give up on dreams. I did NOTHING with my life before being diagnosed with MS. Since that happened I have finished an Access to health studies course with a view to doing a p/t degree, I play wheelchair basketball (keeps me fit!). If somebody had told me that I would get MS and that is when I would get a life, I would have scoffed at them!

It is hard when friends fall away like they do but unfortunately with MS this is what happens. You will make new friends and those will only know you post MS and accept it for what it is. IF your family life is too stressful and it gets too much then I am afraid this one of the times in your life when you will have to put yourself first and not worry about anything else. This is extremely hard to do I know, especially when you are as young you but the stress will do you no good at all. I do realise that if you move out you may be causing problems for your family but it is NOT your fault you have MS OR the way you parents have treated you before finding out you have MS.

All I can say is that I wish you the very best of luck in the future with whatever road life takes you down. Please remember this, and I am repeating myself, you have to put yourself first in situations like this and let everything fall into place around you and not worry about happens as a result of what YOU have to do to stay as healthy as possible, both physically and mentally.

Andy

Hi Rema Hope your doing ok at the moment Hun… Reading your post you’ve obviously got a really difficult situation on your plate at the moment and I can imagine there arn’t any magic words out there thats going to make things drastically improve overnight, but here goes… The diagnosis…it’ll take a long time to sink in, but be brave and read people’s experiences, we’re all different, no 2 cases the same, don’t think the worst I’m guessing your 18…your mum was nagging you to go to college or hand out CV’s because she loves you and wants the best for you, no matter how it comes across It seems from the way you describe things in your post that all your family’s problems from money to housing are all dependant on you…the’re not…you’re not responsible for every persons every problem…take a step back and look at the whole situation from he outside (easy eh?) You mentioned your mental health team…don’t want to pry but tell them everything , the’re there to help, I’m sure a phone call from the will miraculously have an MS nuse call, if not…get the MS nurses e-mail address of the web…google your NHS general hospitals neurological dept, it’ll be there, they’ll help Don’t get into people’s cars you don’t know All the info and experiences and MS tales are here on his site with a wealth of knowledge from lovely people that will always be there for you…all at the click of a button…it’s free and it’s 24hrs Don’t get into people’s cars you don’t know Try and think about each of your problems 1 at a time, if you think about them all at once you’ll just get overwhelmed an go round in circles …the car one again… Big luv sweetheart and everyone’s here for you. Xxxx

We all love you Rema, we all know what its like to feel alone with MS. But believe me, you have so many good times ahead of you that will have nothing to do with MS. You just have to get over the shock, it will take a little time.

To help you do that you need to surround yourself with people who love you and who will put you first - like your brother. Then ask them to help you build your support network - a nurse, a neuro, a physio maybe a councillor - I have all of those.

Then keep all those people close and lean on them until you can carry this on your own shoulders. That day will come. Every now and then you will need them to come back and help you carry it, but they will soon have you back on track.

Be strong and remember you are never alone, we are all family here.