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How long have you been with Ms?

Hi everyone!!! From Spain.

How long have you been with Ms?

I’m ‘new’ as my first symptoms began last year…

I’m really asking to myself if it is possible to live with MS for 25 or 30 years…

When I say live, I mean living with some problems but not bedridden…

Need hope :’( thanks in advance.

I am 29 years old now.

Saludos desde España.

Hi Sergio,

I was 29 when I was diagnosed (1991) after some pretty nasty symptoms. I was very scared and very miserable. There were times I thought "what is the point, my life is effectively over and I don’t want to be a burden. At this time there were no offers for DMTs just steroids. I had a long time off from work but my employer was very supportive. From this low time, I recovered to 80% of how I was before, able to carry on working for another 19 years (till 2010). I got back to skiing , snorkeling riding motorcycles and playing squash (not very well). In 2007 I was diagnosed with SPMS. I have been on various drug trials. I can not do all the things I used to do but have adapted and can still lead a happy life. So my answer to you is based on my own experience, Yes you can live a great life for many years with MS. This might be very different for any other person with MS, but you now know at least 1 person who has been lucky enough to manage pretty well for decades! and I intend to carry on.
All the best
Mick

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I’ve been dealing with it for 41 years now. Originally, it was just me getting tired quickly, mostly in the summertime. A few episodes of brain fog at school during hot weather, and I could no longer take really hot baths. After about 6 years, I had to start avoiding direct sunlight on hot days. Aside from relapses every few years, the deterioration was so gradual that I just adapted as it came along.

I went to trade school, married, had children, worked full time for 34 years and then part time for a couple after that. I got tired more easily than most people, but I still managed to do what needed to be done. There were days when the laundry basket felt like it weighed a ton, but I was also lugging it up and down 2 flights of stairs. Sometimes I had to stop and sit for a minute in between washing dishes.

But I looked after a 4 1/2-acre yard, mowing most of it myself, planting flower beds, growing berries. We always had a dog. For 16 years, I had to drive 56 kilometers each way to work. My husband wasn’t much good, so I had full responsibility for the house and yard.

I finally had to quit working about 18 months ago, but I still live alone and look after myself. I use a cane once in a while, but unless I’m having a relapse I don’t need it around the house. I still mow about an acre of grass, and I planted a small vegetable garden this year. I don’t clean as often as I should, but I don’t have insects or rodents, just giant dust bunnies! I rarely drive any more, but that’s more of a personal preference.

I have had a couple bad relapses over the years. Back in 2007, there were times when my legs would stop working altogether for a few minutes. I’d fall asleep at the supper table, and there were days when my daughter fed me through a straw. That only lasted a couple months, and then I was back to my normal self!

After this last one, I’m just really tired all the time. Sometimes a single load of laundry takes me 3 days, because it’s so difficult to get in and out of my cellar. I either take a nap every afternoon or doze off in my armchair while watching TV. If I have to go shopping, I rest up the day before and again the day after.

But I’m really enjoying the time I have now! I indulge in my hobbies, sit outside watching nature, and get caught up on my reading. It’s a peaceful life.

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Thank you so much Mick!

I don’t know you, but your answer really helped me :slight_smile:

I am feeling what you felt before I was born in 1992… Exactly the same feelings in my head : ‘Sergio, your life is over’.

It’s very curious that every single feeling we feel right know, there were other people in the past who felt exactly the same…

Really really appreciated your answer, thank you for taking your time, my friend!

Cuando quieras estas invitado a una caña en España! When you want you are invited to come to Spain and having a beer!!

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Thanks for your answer!!! :slight_smile:

As I said to Mick, you are invited to Spain when you want!!!

Muchos besos desde España! Kisses from Spain.

cheers! a beer sounds grand. Live day by day and love the good bits, learn from the not so good bits.

Salud

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Not entirely sure, she just kind of showed up and moved in, now I can’t get rid of her :joy::joy:

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HI Sergio,

I started symptoms when I was 29 but nothing serious. Diagnosed with SPMS in 1998 when I was 38.
Now 60 and mobility poor, I use a walking frame or scooter.
All I can say is that I’ve adapted my life as new symptoms appear. In the UK we have lots of help from an MS nurse, physiotherapists giving exercises, Occupational therapists with equipment. Look around this site go to the home page and there are lots of articles.
Take care
Jen

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I was diagnosed in my mid 40’s but my Neurologist records my first MS symptoms as being from 10 years earlier. I personally think it was earlier than that possibly 13-14 years before diagnosis.

This means I lived with my MS for over a decade before I even knew what it was. It does limit me a little now but not so much that I can’t enjoy life (slowed my walking a bit as well as shortening the distance I can walk) and my MS doesn’t show much progression so I’d hope for many more decades to come.

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Hello Sergio

Yes, it’s possible, probableeven, to live with MS for decades. (And @NorasMom wins the award :1st_place_medal: for longevity!)

I’m a mere youngster with only 24 years under my belt. Diagnosed in 1997, it was a 30th birthday gift from an evil (witch) doctor who didn’t even bother telling me. After all, I was just the patient. Nothing to do with me.

I found out the happy news 5 years later. ( I like Darrells answer, except for the female pronoun he gives his MS).

I’ve lived with unmodified RRMS until my diagnosis was changed to SP several years ago, then switched to progressive relapsing about 2 years ago with the arrival of a trespassing relapse. It’s not been my choice to have no DMDs, but my body behaves like a toddler who’s scared of needles. Bad side effects from 4 drugs caused my neurologist to (he did this several times over, like a bad catchphrase), write a list of all available drugs and one by one stick a line through them. Sometimes I had to prompt him (bad double act) ‘I’ve had Tysabri, that was hepatitis’!

I am quite significantly disabled. I use a wheelchair; can’t walk at all now following a fall when I broke my femur rather badly). I’m quite lucky though, my husband took early retirement 8 years ago and has become an excellent housekeeper, chef, personal shopper, carer, driver, sommelier… We get on really quite well. Eat and drink pretty well.

Which reminds me, if I am to join in the MS group trip to Espana :es:, beer won’t cut it. I would like plenty of Rioja, Albariño and Jerez. If that’s not too cheeky!

Sue jeje x

Hello to you.
I’m new to the forum, so finding my way around.
Was diagnosed in 2009. Have been incredibly lucky with just a few relapses, but things have worsened in the past year for me. Am trying to keep focused on some positives, but would be lying if I gave the impression that I’m finding things straightforward. Lots of problems to try and sort with my work and personal life.
Am hoping that this community will be helpful and supportive.
Stay strong.

Sue!!! Jeje you may find It funny, MS in Spanish is esclerosis múltiple, and its female!! Jaja

La esclerosis múltiple… And Spanish people Who suffer MS, as a mental strategy calle her ‘mi amiga’ which means my female friend :slight_smile:

Well!! You know a lot of spanish drinks jaja apart from drinking we Will have to eat so paella, gazpacho, salmorejo and tapas de jamón y queso…Will be in the list jaja.

As curioisity I was born in Castilla La Mancha (Castille) the land of Catholic Kings Who were the people responsible of the Columbus trip to América.

So its a land full of history, also you know many books so its the land of ‘Don Quijote de la Mancha’ jejeje…

Nowadays living in a village near Toledo (a veeeeeery historical city)

I am sure you Will find interesting this message Sue :slight_smile:

Was diagnosed 1981 so 40 years.

Hi there - I was diagnosed 1996 and I’m 58. Until 2021 I was a local Councillor; until 2013 I was practising as a Nurse. I garden, read and listen to music, never liked sport. So, yes you can keep living. Good luck + best thoughts to you.

Fairly new being diagnosed after a seven year journey to reach that. Coping well on my Meds at the moment eighteen months after diagnosis. My brother and dad have it so I have seen both the worst and the best with how it can affect you but I do believe it will be possible to live a good many years with this monster til I struggle more

Hiii

Sorry to hear that tour brother and dad are affected by this disease too.

Hope you live a long long good Life :slight_smile:

When you say you saw the best and worst of this condition, what do you mean? Is your dad as I suppose he did not have the treatments we all have today? Hope not to offend you with the questions.

Hope your brother and dad are doing ok.

My dad is the better. He had primary progressive ms and has just plodded on with only slow progress. My brother has had remitting relapsing but he was diagnosed pre medication and pushed himself too much so made himself very poorly. I’ve learned and now cope better along with the better treatment we get offered I’m more hopeful

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Hello to all you lovely people and I hope you are all as well as can be.
Sorry I am late to post.
I was diagnosed 2009 so 12 years now.
Still working which I truly love, things have got a bit more “wobbly of late” walking with a stick now.
Had to adapt to the new me and now I have it is onwards and upwards.

Nice one Mary. Each new normal brings some challenges. Wishing you all the best
Mick

Thanks Mick, you guys have always helped me whenever I had any worries/queries and that has always helped. Not on all the time but try to dip in and join when I can.
All the very best to you all, Mary x