what happens now? anyone else so young?

Hey everyone,

My name is Shona and im 19. I was diagnosed with MS when i was 18 but went to see the consultant today, i was hoping to start some DMD’s, when he shocked me with the news he thinks my MS is primary progressive.

Im only 19 and thought this was way too young for primary progressive?!

I am one of lifes fighters and have coped quite well with my MS and have a brilliant family behind me. However this has put me down again, I was just wondering if anyone else was diagnosed with PPMS so young and if anyone could let me know how quickly they got worse? I know its different for everyone but would just like some peoples experience. I already use a stick and on long outings a wheelchair. Just seems a massive shock as this time last year I had no mobility problems,

Just some help and experience would be brilliant!


Shona x

Hi Shona,

I was diagnosed at 23 in 1973; yes last month celebrated my 40 years since diagnosis.

My 40 years have been brilliant and obviously I say this tongue in cheek but MS has opened many doors that to a healthy person would be closed. Yes I would have preferred to have led a healthy life but unfortunately life’s not like that.

You’re dealt a hand of cards; sometimes you have to bluff but that’s the hand you play.

Remember MS is not a stop sign; its traffic humps.


hi hun, oh this is just so rotten for you. Have you posted on the young persons board?

I imagine you would get lots of replies there.

I am sad for you. But keep that strong spirit going and you`ll make it.

much lov Pollx

Hi, me again Shona.

Ive posted on the young persons board on your behalf. Hopefully youll get some replies from there too.

luv Polllx

Hi Shona, and welcome to the gang!

Well you couldn’t have picked a better time to be dx with PPMS!

No, I’m not nuts. Just got my MS Matters magazine and MS Research Matters (which you get quarterly if you are a member of MS Society) and this issue is dedicated to progressive MS. There is SO much research going on and they are talking about having effective treatments in the next 5 years!

As a young person you are going to be able to take full advantage of these, and you will no doubt be knocking back the champagne when they come up with the cure… which is on the horizon. Ok, it’s a few years off yet and at your age a few years seems like a lifetime… but this is the first time ever that PPMSers have had a real promise of good treatments and all MSers have the possibility of a cure.

So I really mean it when I say you couldn’t have picked a bitter time!

You are very young to be dx with PPMS, but we have had young people on here before. I’ll see if I can find the user name of a young woman we had on a while ago, and will PM (private message) you.

In meantime, Poll’s suggestion of the young person’s board is great idea.

Come on here and ask anything you want… have a laugh or a good cry with us… that’s what we’re here for.

And remember, PPMS can stop progressing or even improve. No one can tell you how quickly or slowly yours will progress… but for most people with PPMS it is slowly. When you think about there isn’t one human being on the planet who knows what tomorrow might bring… anything might happen to anyone… it’s just that you are being forced to learn this lesson younger than most.

Take care hon and look forward to seeing you on here again,

Pat xx

Hi Shona

Welcome to our “gang” and yes you are very young, but I want

to let you know that there is still a very good life to be had with ppms.

I started my journey with this when I was 29, which was many moons ago now,

and whilst I use a powerchair, my progression was of a slow decline, it did not

happen overnight. I appreciate that everyone’s ms takes a different route, so

none of us can tell you what will happen, but my advice to you would be to

live for today, and do not assume the worse, which I know is easier said than

done, but well worth doing if you can, make any adjustments that you feel best,

and ask for help if you need it.

Take care and remember this forum, as we are here to try and help where we


Pam x

Hi Shona

Me again, and Pat is right, I have just read my MS Matters and it is

full of things being done to tackle ppms, so hang in there.

Pam x

Hi Shona Just wanted to welcome you and lend you some support at what i’s a difficult time. Please don’t think too far ahead - none of us knows what is around the corner. Just take things a day at a time and lean on your loved ones. Remember we are all here to listen and rant and rave at if you want to. Thinking of you, Teresa xx

Hey everyone! Sorry didn’t get back to you sooner been busy at college! Thankyou so much for all your replies and feeling much better about it all today :slight_smile: Thanks poll! I will look on young persons now! Hope everyone is okay! Love shona xxx