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I've just been diagnosed with MS and i feel like my whole world has come crashing down.

Hi,

My name is Bruce and I am 45 years old.

I’ve just been diagnosed with RRMS. I’ve seen the consultants and the diagnosis certainly explains the symptoms I have had the past few years if not longer.

I feel life is on hold and is in total freefall, out of control…

No one can tell me how this will progress.

All i have going through my mind is how will I cope, how will I manage to finish paying the mortgage, get my daughter through University, even when will i get to the point of being a burden to my wife and daughter.

This probably all sounds so stupid but not knowing how fast this might progress or how much longer I can work, walk, how can I plan for the future. Plan for the security of the ones I love.

I know that I only have RRMS and not the more serious conditions but still…

If there is anyone out there that can give me any advice it would be greatly appreciated.

Many thanks.

Brice

im currently in limbo waiting to find out what is wrong with me but my dad and brother both have MS. Brother has RRMS and my father PPMS

the only thing I can tell you is to take your time. It’s going to be a shock as it was for my family. Don’t out any pressure on yourself and try not to get bogged down with ‘how long will I walk for?’ Etc. I know it’s hard but you’ve just got to give yourself time to accept that you have it and then plan to make things easier for you

My dad has had it for years and still gets about for short distances and with your RRMS there are disease altering medications which you might want to consider to cut the number of relapses. My brother uses an injection which appears to have reduced his flare ups.

Most at importantly come on here a lot. They’re a good bunch and they’ll help you through this. Remember you’re not alone

mick

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Apologies for the misspell of the name!! My brain and autospell rubbish on the phone!!

I am sorry about your diagnosis.

The chaos of emotions and worries and uncertainties and fears for the future, financial, emotional and practical, that you describe so eloquently are completely normal. Those of us who have had that dx will recognise those feelings very well, and there is nothing about it that sounds stupid or strange, just familiar.

All I can say is that you won’t keep feeling as bad as this. There is nothing remotely funny about where you are right now - it is one of life’s not-good times - but things will settle down, honestly they will. Your brain will start sorting through the whirl of thoughts and get them into some sort of order and you will start, gradually, dealing with the pile of sticky stuff that life has just piled unceremoniously in your in-tray. Normal life will reassert itself, the person you are will reassert himself and you will find your way through all this to calmer waters. You will get better at dealing with uncertainty (I know that is hard to believe just now). It won’t happen suddenly, most likely, and it may not happen quickly, but it will happen.

My advice in the meantime? Hang on in there. Be gentle with yourself, and don’t be surprised or disappointed if you are a bit all over the place emotionally for a bit, or find yourself behaving in uncharacteristic ways. That has a tendency to happen to everyone, and it is not a sign of weakness or failure to cope - it is just a normal reaction to that sort of bad news. All part of the coping mechanism.

An MS dx is all sorts of bad news, no question. And it feels like the end of the world, of course. But it isn’t the end of the world, and the trick is to know in your heart of hearts that you will find a way of dealing with whatever comes along, and that life with MS can be a good life. Because it really can be.

Good luck with it all.

Alison

Hi Bruce
The thing that you MUST get your head round is that your MS will develop as fast as it develops - and that will not be at the same rate as anyone else’s. Some people have done some quite amazing things after diagnosis. No, this is not one of those “Inspirational” statements, just fact.

What you can do, is to do whatever you want to, while you still can - tomorrow could be too late, or there might still be time in another ten-fifteen years or more. You just do not know, and nor does anyone else.

So get practical:
Does your life insurance have critical illness cover - if you don’t know, find out. This might take the potential financial pressure off.
Start thinking about your present job and what might, in the future, stop you from doing it. What skills could you take elsewhere?
Whether you tell the boss depends on the firm and the boss. It could be a good idea as they may have to make allowances for you.
You MUST tell the DVLA if you want to keep your driving licence, and if you have a car of your own, tell your Insurance Co. as well (then you will be covered). This might save you quite a lot of aggro in the future.

And remember - there are a lot of people on this forum who are experts on something. So if it’s on your mind, ask.

Geoff

Hi Bruce, I completely understand how you’re feeling, years ago when I was dx I felt like I’d run into a brick wall…early days yet so try to take things one step at a time. You may want to start on DMD’s, your neuro will explain about them. It will be hard, but as you get used to it you’ll find lots of information to help you. You won’t ‘become a burden’…just ask yourself if your wife would become a burden to you if it was the other way round? Nothing you’ve written sounds ‘stupid’ but please try not to race ahead, give it time to sink in…

Lots of helpfu info & people on here too, so kee in touch.

Rosina x

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BRUCE! NONE OF THIS SOUNDS STUPID!!! NONE OF IT! AT ALL!!!

Mind you… i would say that… the exact same thoughts go through my mind every single night when trying to go to sleep, and goddamnit, they are there waiting for me in the morning too!

The MS in my family was brutal and relentless. And the same may happen to me. Or it may not. I may not relapse again before i get hit by a bus. Or a mad cure may be found next week…

Many, many things in life are uncertain and this, is one of them. Unfortunately for some of us, when we have a range of symptoms and confront a doctor with demands of diagnosis, they find resolution by applying the MS tag. They are then seemingly free to shrug their shoulders whenever asked “what will happen next? how bad will it get? when might it end for better or worse?”

We live in uncertain times; airliners are shot from the sky, viruses break out and kill entire villages and unspeakable horrors are committed for religious ideaologies and yes, some of us receive bad news from medical ‘experts’.

Doctors do not have all the answers and consequently neither do you. Are they quacks? no. But when the dark thoughts of anxiety manifest, i take some comfort from thinking that for MS at least, they are.

But with that said, the docs can give you drugs to remedy the symptoms of a relapse asap so as to not impact on your life too much. They also have other drugs to make sure that any such episode remains mild and fewer and further between. So they have some uses.

In the meantime, feel scared, pissed off, mistreated, unlucky, anxious… but also trust that you will grow accustomed to the ‘MS tag’ and in all reality, it may not end up being as bad as you fear it might.

Stay chipper!

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Hey Bruce,

i am on the verge of being diagnosed. I really do know how you feel. I’m a 40 year old mum with an eight year old boy, everything is great in my life, lovely husband, family, job etc… It feels like you are loosing yourself at times hey? Just wanted to know that I I’ve read your post and understand x