Hi everyone my name’s Paul As the title says I may have ppms. I have had a gradual decline for around 4-5 years and was diagnosed with ms last year, ever since then my decline had gotten worse. Currently I have no dexterity in both hands, optic neuritis in my right eye, problems walking for longer than 10 minutes sometimes 5 minutes (I look drunk) and bad fatigue . I feel that there is nothing I cañ do but (I’m not usually like this) it might be better if I didn’t exist. I was an engineer before my diagnosis but had to leave as I could not work safely and had to move. I’m up against a wall for what to do as if it is relapse remitant I have not in the longest time i had a day I have not felt like this. Soŕry for going on I haven’t spoken about this properly as I feel down and think if I was not born it would be easier on my family.
Okay Paul…let`s just see if my support can help at all.
You are very young to be struck down so badly by chuffin MS.
It`s an absolute swine, I know!
I was wrongly diagnosed with it for 10 years. But in 2010 was given a different label.
My condition is as cruel and is incurable too.
But there are oodles of folk here, with MS and PPMS in particular. Why, they even have their own board.!
So why not see what replies of support you get soon?
It saddens me greatly, when anyone thinks their life is over and worth zilch, due to this poxy illness.
But look around you Paul, life goes on, even with this disability.
You`ve yet to find your niche, your way of coping.
What family and friends do you have?
Please dont push people away, when they want to spend time with you and help you.
There are professionals who can help and guide you eg physios, OTs, mobility specialists.
Be kind to yourself and take care, yeh?
I wish I had the words to remove all the pain you feel right now. Though I may never meet you, be comforted in knowing that I care. I want you to live.
You matter. If for no one else, understand that you need to keep living because there is more left for you to discover.
Just because you have MS it doesn’t mean that your life is over. It’s just not the life you were expecting. The reason why you are still breathing is because you still have a purpose. Everyone is waiting to see what you decide that new purpose is going to be.
PPMS at 27 is unfair. My symptoms were starting at that age but they didn’t have a real affect until 7 years later. I carried on working until I was 57. It is an unmistakable feature of my life but it’s definitely not a fault. But coming to terms with it is massive. It may help to take stock of the impact of your symptoms. If you air them on here you’ll get plenty of good advice and assurance.
I may be in a wheelchair, on my own and quietly existing on a modest income in a fair degree of solitude but I certainly feel useful to myself and others.
Best wishes, Steve
Like you I was diagnosed with MS 44 years ago in 1973. In them days; no different types, no MRI, no DMDs, no nothing. I had one ‘attack’ in about 71 then went slowly downhill.
I am in a wheelchair as one of my legs is useless; the other leg was amputated owing to catching MRSA in the hospital; some 15 years ago; long boring story. Also, I had Optic Neuritis affecting my right eye; left it blurry; but still the same after 44 years.
So apart from my amputation, all the rest happened all that time ago.
My MS Nurse says’s I have SPMS because of age but no; it is PPMS.
There is a drug in phase 2 trials for PPMS, see http://www.nbcnews.com/health/health-news/new-ms-drug-ocrevus-wins-fda-approval-n739776
Don’t think about ending it mate; there’s no way back from that and there will be an answer soon, promise.
heed George`s words.
Sound advice pal.
Hi Paul, life is so unfair I too feel this way sometimes but I think if you tell your family how you feel they will put your mind at rest and the reassurance that you are needing will follow. Please take care and keep in touch, you don’t have to suffer in silence there is always someone here to listen Angela x
my name is Jemma, i’m also 27 years old and i have PPMS - i forget things on a daily basis - i regularly wet my myself - and i’ve been in a wheelchair for the last 2 years … and my life is amazing
but when my MS kicked in 2 years ago, just like you i thought my life was over
i told my partner to leave as i would just be a hindrance to her - she did’nt listen and stayed
i told my family i could no longer work in our family business - they found me other things to do
i had to give up playing badminton at quite a high level - i now play wheelchair basketball, go swimming 3 times a week and go Kayaking when the weather is nice
my social life is as hectic now as it was before the MS kicked in
i still have my “why me” days, but my life is no worse than it was before - its just different
i’ve lost a few friends because its probably not cool to hang out with someone in a wheelchair, but i’ve gained more than i’ve lost through the various activities i do now,
you’ve just had a massive kick in the teeth with some life changing news, but i promise you it does get easier once you start to get your head around what’s happening … and remember, you’re never to old to need your Mum