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stumbler
3 years ago

@amymellor , hi and welcome.

A diagnosis of MS is a major shock to the system for you, so what you should do is sit down and relax and allow yourself the time to take in this unwelcome news.

You should take this me-time to use it to learn a bit about MS. I should imagine you’re doing that now, which is why you find yourself here.

A word of warning. The internet is a veritable fountain of knowledge, but you do need to be careful. You should really only go to creditable websites, like the MS Trust or MS Society. This will help you to avoid any horror stories, which are usually taken out of context.

You’ll find some useful reading for the newly diagnosed here:-
http://www.mstrust.org.uk/shop/products.jsp?catid=56

So, take your time and ask any questions that spring to mind. 😉


krisp
3 years ago

I’ll second stumbler on that
Stay away from anything no reputable or you can scare the living crap out of yourself
Here is very good and a lot more normal for want of a better word than some other forums etc


amymellor
3 years ago

I’m trying to get to grips with it all, just struggling at the moment with money my wage has been dropped by half and i keep ringing numbers for help but keep being passed across to loads of other places just feel im trying to find everything myself till here. So yeah sound really helpful here =)


stumbler
3 years ago

@amymellor , you don’t need money problems on top of this diagnosis.

See if you can get an appointment with your local Citizens Advice Bureau to chat about this side of things.

😉


brokendancer
3 years ago

Hi Amy and welcome,
Yes a list would be REALLY handy, I remember all the calls etc. and with diagnosis comes:

A. Shock
B. Lifestyle changes
C. Medication and any appointments to juggle
– and hardest of all
D. Grieving over the life you anticipated and aimed for

You’ll get there Amy and a good place to be is here, getting some support from people in similar situations
Sonia x


krisp
3 years ago

I think if you go onto the mssociety website they have a free call
Number there and they could probably help you in who to speak to etc


alli
3 years ago

It’s all a process, but you can do it. I had to get used to asking for help so I understand that some life changes can be a contest between pride and humility, but we are all here for this reason! You are not alone!!! 🙂 🙂 🙂


amymellor
3 years ago

thank you everyone, ive tried to go see the citizens advise people but i have to wait two weeks for an appointment and all the numbers i ring keep saying need something else first it feels never ending i guess i should stop whining and just get on with it. My boyfriend is trying to help but we are struggling, sorry to be a pain i dont mean to moan i just dont know who to get through to first to gt it all rolling =(


graham100
3 years ago

Hi @amymellor. Just don’t expect anything to happen very quickly. Everything takes months but is normally sorted in the end. Sorry but you need to be patient and at the same time keep on top of anything your trying to sort. Like phone once a month to check they still remember you. Never feel your a nuisance. Stay calm but firm. Most of the people you speak to are very helpful. But they can’t cut the red tape. Good luck. It will get easier.


amymellor
3 years ago

i just cant get through to anyone, but yeah you are right thank you =)


alli
3 years ago

It all takes time. I am waiting for my hearing for Disability, and that whole process has taken over a year now. We all know and understand what you are going through, sorry I can’t suggest anything as I live in the US. BEST OF LUCK WITH EVERYTHING AND KNOW THAT EVERYONE IS HERE FOR YA! 🙂


stumbler
3 years ago

@amymellor , here’s a couple of numbers (as suggested above) for you to try :-
MS Society – 0808 800 8000
MS Trust – 0800 032 38 39

And, the last thing you want to know is that you have to advise the DVLA of your diagnosis (if you hold a driving licence). This is just a process of a bit of form-filling, providing authorisation for the DVLA to get details from your GP and Consultant.

The process can take a few months and may result in you getting a 3 year licence. You can continue to drive throughout, unless you are advised not to, or feel that it’s unsafe.

You also need to tell your car insurance company. They can’t increase the premium because of your diagnosis. And, they will probably only want to know that you’ve advised the DVLA. 😉


amymellor
3 years ago

thank you so much everyone =)


stumbler
3 years ago

@amymellor , never feel that you’re alone with this. You’re starting out on a journey, just make sure you take your boyfriend with you on this journey. 😉


julie01
3 years ago

Hi. Main thing I’ve learned last five years with my friend is no stress. Take ten steps back relax breath and try tackle things on a slow process. Stress can cause flair ups has we’ve seen in his case . Not all cos everyone different . But he has learnt to not let anything get him stressed instead he passes it to me lol . Good healthy diet . Exercise helps him . Last thing he wants to do right now is exercise but to keep going he must keep moving.
Have you tried just going to a one stop shop and asking them for advice guidance with types of help you need financially etc they are good .
It’s hard to say to some one who’s been diagnosed don’t stress . But honestly I’ve seen the effects it can have on some people . Please try pass things that stress you to your partner or at least do it together.


amymellor
3 years ago

thank you, we do work through the stress together just today was a bad day for the both of us, little sleep and family not fully getting it, i think i’ve just let myself get to far run down and yeah stressed with everything, im trying to accept it and stuff, i just feel so useless at the moment i know alot of people on here have had the whole needed to be dependent on someone, its just weird at the moment, since joining this site ( i know only this morning) it does feel really nice to talk to people who know, and i know i keeps saying it but thank you everyone so much =) x


hollylb10
3 years ago

Hi Amy I was diagnosed last week. For me there was some kind of relief as it had been going on for a while with clear scans this time last year. So far I am still living my ‘normal’ life and I know there is a good chance this will continue with obstacles to overcome along the way, but I am fully aware that one day ‘normal’ might be something completely different to me. There are some promising drugs that will hopefully be around over the next few years so we can have some hope!

I have some financial worries too, I work for myself so if I am ill and can’t work then that means no money. I feel the pressure is on to stay as fit and healthy as possible so I exercise and do pilates and eat a healthy plant based diet. I also have 2 children 3 & 5 so being Ill is not an option!

You have the strength to fight it, you just need to find it. Once everything has calmed down you need to relax and love yourself and your body and you will be ready to battle it 🙂


graham100
3 years ago

Yes the DVLA thing is no big deal. Though I did have to send a new photo?? I still look the same as I did 20yrs ago. Lol yes your right I am obviously male,, lol. Just remember that 99.9 % of humans are selfish, me included. Not horribly. No one normally means to be. But if I didn’t have MS, I wouldn’t be righting this I would be trying to sort out my nxt tee time on the golf course. Lol. Favourite quote. You don’t get it, till you’ve got it. I use that lots. My wife is brilliant. But she can’t understand how I really feel. When she has a headache I just think,, Again. Lol. Don’t expect to much from anyone then you won’t feel let down. (Don’t worry, be happy) xx


gemmat2014
3 years ago

Hello.

I have been diagnosed 3yrs in November.try not to stress easier said than done but I Do not get stressed hardlies ever now over anything as I don’t want a relapse to start up because of it,I’m using copaxone now after tecfidera was no good for me side effects wise,by the time I was diagnosed I think I had read everything I could on ms so it didn’t scare me so much when I was diagnosed.things may change as I get older but for now I’m fine and my symptoms are nothing major.just read up as people have said and keep calm you will get there in the end x


mumofmser
3 years ago

Hi Amy
wanted to say hi …. pretty new to all this too. My daughter was diagnosed in March she is 17. We are waiting now to be seen treatment centre. It’s pretty scary and your family just assume the worse. We have not told half of them yet just seems pointless until we know ourselves where we are going with this. It’s great you have a supportive BF .I hope you sort your finances out its not easy navigating the benefits system if you have never used it.


elisha24and
3 years ago

Hi Amy I am newly diagnosed to. Well it’s been a year the mms society are fantastic they give you loads of support and advice. I were struggling getting to work I were getting taxie to work and home, and haveing to cut hours down at work it became harder with money, but after advice from mms society I rang the job center and now recieve a little help from the Jo’s center. And I myself have been waiting to hear from the dissabbilty which has taken 7months they are come this Friday to my home to access me. There is help my lovely I felt a loan but now I feel a lot better haveing this site ms society site to. If you need anything just message me Amy, from the ms nurse to these sites I have learnt it’s not all Dome & Gloom . And there is always help hear 😊xx


elisha24and
3 years ago

Forgot to say the help I get with taxis is called access to work xx


ruggermad
3 years ago

Hi Amy

Just wanted to say hi and welcome to this great site.


amymellor
3 years ago

hello everyone,
I saw my physio today went okay so i’m a bit more positive, and we managed to get through to the job centre after hours so hopefully will be getting help. The one thing i want more then anything now is to gt back on the ice =) its going to be a long way but i have my goal and all of you fine people, thank you everyone x


makkymee
3 years ago

Hi @amymellor

Just want to say hi and welcome to the site. Diagnosis is a lot to deal with & really does take time. It can be an emotional rollercoaster & the more you learn the more questions you’ll have but always remember there are no stupid questions 🙂

Big hugs
Makky
X


northernlass
3 years ago

Hi @amymellor welcome to the site… I hope you find a lot of useful information and support on here like I have… (DX’ed a year ago 28th April 14..) I am in a much better place now than back then but still have my “Wobbly” moments… (physically and emotionally) .. But great to share and read the experiences of others who “get it because they have it” ( nice one @graham100 ).. and maybe your famalam are just trying to come to terms with it too.. they will get there in their own way but maybe they need access to some of the MS websites (reputable ones of course) too, to get information and develop an understanding of what it is that you are having to deal with… 😀 Best wishes.


chloeautumnx
3 years ago

Hi @amymellor.
Just wanted to say hello and welcome to the site. I’m recently diagnosed (January 2014). Diagnosis is tough and its a lot to get your head around. I’m still getting my head around it myself. You will get help and there are some good medications out there now which I hope will help. Finding this site helped me loads!!
Big hugs to you x

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