asht1994 14/03/18
Last reply 3 months ago
Advice

Hi there,
I am 24 and have recently been dignosed with RRMS. i am finding it hard to cope with at the moment and just would like people to give me some advice on how they have coped and got on with things etc, as i feel quite in the dark and out of the loop with everything.
Any advice and help would be greatly appreciated.
Thanks

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stumbler
3 months ago

Hi @asht1994 and welcome.

A diagnosis of MS is a big thing to take on board, especially at such a young age. This isn’t a race and there are no timescales, so just take your time and be gentle with yourself.

What you need to know is that MS is not a death sentence, and it is not a slippery slope to a wheelchair. It is now a manageable condition, with a range of medications now available to keep the MS in check.

Knowledge is a powerful ally, but beware of Dr. Google, who can find horror stories that are totally out of context. Make sure you stay with creditable websites like the MS society and MS Trust.

So, how do you move forward? Well, a healthy, balanced diet is a good start. And trying to avoid the extremes of life, not to push your body too hard. And, most importantly, avoid/manage any stressful situations that you may encounter. Stress can be a major agitator of MS.

Otherwise, you’ve found us now, a large group of people with, or associated, with MS. We have a great deal of experience, which we can share with you. So, feel free to ask any questions that you may have.

Although you may feel it, you are not alone. 😉


vixen
3 months ago

Hello @asht1994 it’s good that you’ve found Shift, as so many other sources don’t always give you the right picture. If you type ‘newly diagnosed’ into the search box you will find posts from others in your position and many your age too. I was diagnosed last year and I think the most valuable things I learned, were firstly, what an impact stress and anxiety can have on our MS. So, I have learned to prioritise and not waste time getting consumed in minor things of annoyance. Also, not to worry about things too far in the distance. I focus on keeping well, and what I need right now, and maybe a month or two away. I don’t know how I will be feeling in 5 years, so I don’t worry about that right now. But you know what? None of us, MS or not knows what will be happening in 5 years and you and me are no different! Take all the support you can get, be proud of who you are because having MS is not going to change who you are. Stay strong x


wjgregg
3 months ago

Dear @ash1994,

I was diagnosed with RRMS last summer. However, in 1003 I was paralysed on my right side, and in hospital for three months. At the time, it was diagnosed as encephalitis. I got on with my life, working hard, got married and had a wonderful daughter. I slowed down a bit, and developed a right-sided limp, but kept going. Last year I had two major relapses, the second of which put me back in hospital (for the first time in 24 years, mind). My consultant got me on Tysabri as it was felt, after two M.R.I. scans in relatively quick succession, that my multiple sclerosis was rapidly advancing. None of my records from 1993 were available, but my consultant wondered whether my episode of “encephalitis” was perhaps my first relapse. If so, I had been living with Multiple Sclerosis for 24 years. As Stumbler has said, in his excellent reply to you, it is not a slippery slope to a wheelchair. It is right, also, that there are a large number of treatments that are now available, or coming on stream, that were not available before. My consultant told me that if anyone had to be diagnosed with M.S., now was the best time. Who knows, they may even find a cure soon. They weren’t saying that in 1993!

So, don’t panic, try and avoid stress, eat healthily and stay connected. You have many friends out there, who you just haven’t met yet. I see you are from Manchester (great city – I used to work there. My wife still does). Check via the M.S. Society whether there are any support groups in Manchester. I’m sure there must be. I have just found two near me, in Skipton and in Pendle. It is always good to have people you can meet with and chat to. We all want to help each other.

Take care, and don’t be a stranger.

All the best.

Jon


grandma
3 months ago

Dear ash1994

As Stumbler said it’s a shock, and you must have so many questions, but don’t do anything drastic, take time and listen to all the advice, it’s free!

There are plenty of old veterans like me (61) who have had the disease for more years than we care to mention. I also started with rrms and was told it would be 10-15 years before it became 2pms, it took 23 years, so I”m not complaining, there was no1choice of drugs like there is today, I have just been swapped to Tecfidera (only 10 weeks ago) after 23 years on Avonex so there is plenty of alternatives with dmd’s depending on age, lifestyle, severity etc., so make friends with your ms nurse, they’re great and usually know more about ms because that’s all they do, the neuro’s cover a lot of other diseases as well.

You have lots of friends here, and as has already been said “you just haven’t met us yet😍


tracyd
3 months ago

@asht1994

It’s a shock when you’re first told

For me it was like a little part of me was suddenly someone else. It felt that way, it had become / was becoming something ‘other’ and I didn’t like it.

I was angry at my immune system for betraying me – for being so bloody stupid that it didn’t understand bad from good – that it thought my nervous system was ‘food’ – well it p***ed me off.

As has been said so eloquently – research the treatments, do lists of pros and cons for each in relation to your life, your lifestyle, your work, your family and choose ‘your weapon’ the one you’re going to use to go to war against this MS nonsense.

Don’t wait to be offered a treatment, ask for it, fight for it if you have to, but don’t wait until ‘it’s bad enough’ to consider it. The human body is a wonderful thing it can repair things if the damage isn’t too great, stopping this crappy thing in it’s tracks, drawing a line in the sand and pointing a DMT loaded gun at MS’s balls and shouting yippee-kay-yay fairy cake at it while it cries for it’s mum – it’s rather liberating if I’m honest.

You have a friend request, if you need to talk I’m happy to share contact details by PM xx


asht1994
3 months ago

Hi everyone,
Thank you all very much for your kind words and support it really means a lot to know that there are other people I can talk to that are in/have been in the same situation.
Natasha 😊 x

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