Forum

Is MS always as bad as it's portrayed?

Hi,

I was speaking to MS Helpline, and was told we only really see the bad stuff online because it’s generally people who struggle with it that tend to write about it. Those that are doing well tend to carry on with their lives. Does anyone actually know of people who have had MS for decades and remained normal and not accumulated disability? Because I tend to hear only about the negative. Any thoughts?

Thanks!

hi i know of one lady who goes to the MS therapy centre in Trafford Park. she is 75 and has had ms for 40 years. she uses a rollator but goes on holiday 4 times a year. so yes there ARE success stories but there are also a lot of us who have it tough. try to meet people with ms who are positive despite the problems that come with it. the ms therapy centre is such a place and the people who go there are brilliant. also there is a lady on this site called katy63 (or something similar - my ms brain) who holds down a career, goes running, organises park runs and she to me is a shining example. what you need is to see a neurological physiotherapist to strengthen your body to give you the best chance. strengthen your core, pilates is fab for this. try not to let it stop you from doing what you always planned to do. keep finding a reason to smile every day. you’ll be fine.

2 Likes

Hi Anon, The MS Society and other related charities ( bless them ) have to point out the negative because, in part it enables them to raise more money for badly needed research. This wretched disease affects us all differently, even though we have it’s symptoms in common; some of us go on without a pause, others have it a little, or a lot worse, but Carole’s advice is very sage. See a neuro physio, keep those core muscles strong and keep walking/exercising as much as possible. If the worst comes to the worst, a progression in disability caused by MS may feel like the end of the world, but believe you me, it isn’t. I’m confined to a wheelchair, but I lead a full, rich and happy life, and I do not feel constrained either by the chair or MS,It’s taken me YEARS to get to this place, not months or days( as I first thought it would when initially diagnosed) so keep on keeping on.

I echo Carole’s parting sentiments - find a reason to smile - and to laugh- every day. You will indeed be fine.

Nia.

1 Like

Thanks for your replies. @arcticvixen, how long have you had MS for and how long did it take to reach SPMS? Thanks x

Yes

Indeed, there are many people with MS damage who are blissfully unaware. There are also people like me who even though diagnosed have had many years and great lives with MS. I was diagnosed in 1991 after some pretty nasty issues, I eventually got back to work (including international travel) I was able to play squash, ride a motorcycle and ski (although I was always a bit naff at skiing) My comment to you is that you should enjoy your life under whatever circumstances you have.

All the best

Mick

4 Likes

I agree with everyone else. It’s taken 22 years for me to use a wheelchair (to be fair it was 15 years when I first used one), but before that I worked hard, played even harder (had the hangovers to show for it) and enjoyed my able bodied life. Even as a wheelchair user, I’ve been to India twice and really have a pretty decent life. Some of us have our physical problems, but still enjoy our lives.

(I think it’s Katy79 who Carole was talking about. She is a shining light on here. She’s fit and well but still finds time to answer posts, particularly about Lemtrada.)

Sue

2 Likes

thanks Sue,

i will have to match her year of birth with a family member’s.

my Billy was born in 89 so katy is 10years older than Billy.

Personally I think everyone will deal with having MS differently.

I guess it all depends on how it impacts your life, what your life was like before having MS, and how it progresses.

Initially when I was first diagnosed it didn’t really hit me that hard because after the initial attack things seemed to settle down within a couple of months and life seemed to go back to “normal”.

Now though 6 years on, and progressing fairly quickly over the last 18 months it now feels like a totally different disability.

Family, work & social life is hugely effected.

I had a very very active work life prior to having MS, which wasn’t really effected until things started progressing, now though its a completely different ball game.

So I think it depends on how you were before MS and how it actually impacts your life now.

Personally YES I think is MS is as bad as it’s portrayed, but that’s speaking from how it has effected me personally.

2 Likes

Hi anon,

I have had MS for 18 years and I can walk and function almost normally.

I do have issues with my memory and wear glasses due to optic neuritis (which I can’t spell) but other than that I live a normal life, am married and work.

As everyone else has said, MS is so unpredictable and affects everyone in such different ways, but I want to give you hope that it isn’t all doom and gloom, even if the disease does progress quickly, it doesn’t have to be the end of your life.

RoaryLion

1 Like

Hi Anon,

I’ve had MS for 30 years and have had SPMS for the last 4, but the diagnosis of progression wasn’t - and isn’t- the end of the world. As I say, I lead a full, rich and happy life. I haven’t been to India like Ssssue ( Very adventurous!!!) but I have been to the USA twice and am hoping to go to Australia ( one among many places too numerous to mention) - next year if all goes to plan. As you can see from everyone’s replies we are all different, in our response to the disease and in its progression, but as Roary says, it’s not about doom and gloom. Its just about living your best possible life despite the curve it’s thrown you.

Nia.

Yes I know quite a few actually some of whom which you would never realise they were sick. One of my friends was way into her seventies and loved her job really loved it and still worked her brother had MS too. RRMS. both of them. she had MS 40 years so did her brother. more or less.

I knew of one lady who went dog shows all the time and i belong to a group of msers who ride their horses regularly. I know several who go on holiday, drive abroad too. I agree to a certain extent, as they are too busy living their lives my friend never went on facebook groups.

when i worked back in the late nineties i actually met a lady who had ms for 10 years she was in a wheelchair, so obliviously i thought that was how it went. she went to our college every day to learn I.T. The lesson one day was googling so she wanted to find out how to get out of her chair and better and we googled MS in our area and found the centre had a HSCT i think the deep sea thing where you can sit in side. so she rang them when she went home, and her husband took her and over six weeks therapy she was out of her chair and doing physio to gain her strength. One day she walked into her lesson with crutches it was a huge effort for her, but boy i wont ever forget it and she has been my inspiration since i found out i had MS.

I actually come of groups for breaks as i find sometimes they make me feel morbid and worse.

Yes a lot of people struggle with their MS and need the support and are good enough to give others it, but i do find groups can be one sided. also my neuro doesnt like them either. He said to me one day he was sure that some people joined them and it made them worse as they were picking up on all the negatives. Not sure about that.

it is a good debate though. sometimes we need to realise that MS is a snowflake disease and it doesnt fit everyone the same thankfully.

I feel i am one of the lucky ones to be honest. I am not as bad as some people i know that. xxxx

Clearly from all the replies so far, MS effects people very very differently.

Someone who still has good mobility will probably give a different response to someone who’s mobility has been affected and is the main problem.

How can someone who’s mobility has not been affected by MS know how a person who’s mobility has been affected fully understand how that person really feels, or how their poor mobility actually effects them ?

The reality is that a person can only comment on how MS affects them as an individual.

Every ones lifestyle is different, before and after MS, every ones degree of MS is different, and how it impacts that person will also be different.

I do agree that you should try to make the best of what you still have, however it can be very difficult if like me you look back and see what you used to have compared to now !

Thats not being negative, it’s being a realist !

Thank fully I don’t have memory or vision problems, and I can only imagine it’s not very nice at all, and must have an impact on that persons life in one way or another, but that’s all I can do, is imagine !

As I’ve already mentioned up until 18 months ago I was still fairly positive that my MS wouldn’t impact mine and my families life if it stayed at the level it was (wishful thinking), but today even though I still try to get to work and do as much as I possibly can, life now is completely different to what it was just 18 months ago.

Theres a young chap who’s on the same Simvastin trial as me, he’s a full-time wheel chair user, has a colostomy bag and has to self catheterise, his mobility is shot, he was self employed with his is own very successful company.

He’s now on benefits struggling to make ends meet, he’s 35 and has 3 kids.

He was diagnosed with MS 12 years ago, for 10 years he held everything together, struggled with his mobility a bit but fought through it, 2 years ago out of the blue everything changed, he progressed very quickly.

As others have mentioned MS is unpredictable, you can be very upbeat about it and grasp life with both hands, and just hope it stays at a manageable level.

That’s what my attitude used to be like, and certainly like the young chap I’ve mentioned.

Please don’t think I’m a doom & gloom negative person, I’m really not, but I am a realist .

After all, I do feel that I’ve gained pretty good experience over the years, and have seen first hand how MS effects people so differently, especially as myself, sister and now 2 cousins (1 only very recently diagnosed) all have this sh*ty disability.

3 Likes

jactac

your reply-post 12 is amongst one of the best i have seen on here-thank you.

original poster-briefly my life was turned upside down within 36 hours. huge attack affecting bowels/bladder/speech inc swallowing/all of right side (shoulder to toes). i went from driving, volunteering and bringing up 4 kids on my own (had to give up work due to damage from previous attack which were 12 in 2 years) to needing carers to attend to assist with basic living skills. 13 years later i manage to type on here with my one finger using my one eye that can see and hope that any input i do give is positive whilst being realistic (like jactac!) and if it gives hope to one other person then the huge effort has been worth it for me.

we can all learn from each other but we cant imagine what its like to live anothers life-thats impossible for all the reasons jactac pointed out.

take care and try and smile every day.

ellie

5 Likes

As others have said, MS is a disease that seems to be unique for each person. If you’d have asked us in 2011 how bad my wife’s MS was we’d have said it was well managed. She was RR, on beta interferon, could walk etc etc. She started going downhill gradually during 2012 (the odd fall in the street). By 2013 she was having to walk outside with a stick. By 2015 she’s in a wheelchair outside, but can still get around the house by holding on to walls. Still having falls, but can get herself up.

Now, 2019, she is 99% dependent upon me for everything. No mobility. Can’t turn herself in bed. Struggles to sit up straight on a chair most days. Has some movement in her right arm, but the past 2 weeks even this has been failing her and I have had to feed her a few times. The cliff she has fallen off in just a few years is scary, and has been fast - much faster than we ever expected based on what you read online.

Also worth noting though, until recently we didn’t go on to forums. We were the ‘healthy’ ones who you didn’t meet (or at least never knew she had MS).

She fights every day. She’s a real fighter. But we don’t know what the next day, week, month, year will bring. Live life to the full whist you can as you never know what’s around the corner!

2 Likes

Hello I’ve had MS for 15 years now and you wouldn’t know looking at me. I’m fit as a fiddle and without my yearly mri scans showing lesions, I’d doubt my diagnosis. I’m lucky indeed. Katy

2 Likes

interesting question -

Some people have bad m.s. but don’t see themselves as being ‘bad’ - others have it ‘less bad’ but see themselves as being vey poorly - if you know what I mean!

(A recently dx’d friend said she thought the medics were regarding her m.s. far too trivially - to them m.s. was just a n inconvenience.)

This is so true. Among hospital physiotherapists, for instance, if you don’t need two carers to get you into the hoist, they’re just not interested. But you know what they say: minor surgery is surgery that is happening to someone else. I think the same applies to MS. It is a life-changing dx, even if it doesn’t immediately cripple you. Having said that, many people with a lot of accumulated disability make good lives for themselves, and most of us do our best.

Alison

1 Like

I know 3 other people apart from me who have ms. You wouldn’t know there was anything wrong with one of them, she still works 20 hrs a week and walks to work and back. She has to walk up a hill to get to the supermarket where she work. A friend of mine has ms and is a bit unsteady on her feet. Another woman I know is now a full time wheelchair user but when I first met her 10 yrs ago she was walking but she did have a nasty limp. No-one knows how it will affect them.