Diagnosed at 53

Everyday living
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Hi, I was diagnosed last year at age 53. No previous symptoms until July 2014 when I was then 52. I believe I am termed as an LOMS or something like that. I would like to hear from anyone in the same boat and share experience of MS. I have tried to find information as to if the disease progresses faster if a Late Onset MSer. I have RRMS. I had one strong attack in 2014 but no lesions showed on MRI scan at that time. Throughout the following year I just felt fatigued, had balance issues and generally just felt like crap. My second MRI scan then showed lesions. I had another in August the year with no signs of activity however I do feel generally worse. My worry is the MS is going into SPMS. My MS Doctor just says these are symptoms of MS and not much can be done hi how is fair enough but nagging away is the though the ms is evolving towards SPMS as I said because of my age. Any shared experiences with othe LOMS sufferers would be welcome.

Thanks for reading, Trev

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HI Trev, welcome to the board.

I’m not LOMSer myself (26 when I was diagnosed), but I knew someone in her 40s who was diagnosed not log after I was, and she seemed fine for a long time (not seen her for a few years so don’t know what she’s like now). I just did a quick google search & found this, which basically says no one really knows how late onset affects progression - How Age Affects Multiple Sclerosis Symptoms and Progression | Everyday Health

But whether or not there is a link, you can help yourself with good lifestyle choices, things like a healthy diet, exercise & avoid stress.

Sorry I can’t help more, but I hope that helps.

Dan

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I was diagnosed at 64 February this year after trying to get a diagnosis for 10 years. My first symptom hit me in 2000 when i went blind twice, but it was totally ignored. So my first big issues was when i was 49, the next really bad crash and burn (although stuff in between but i could still function), was 2006.

Since then its been a slow progression downwards. I never really had times when i was ok its been kind of ongoing, but with varying degrees.

I would say in the last 2 years it has got progressively worse but slowly, and now in February after another positive VEP test for ON my neuro said i have progressive MS and almost apologised to me for it taking so long even with all the positive stuff on my tests I just didnt quite make the full macdonald criteria until this last test result from what i can gather.

I have been now to the pain clinic, and the doctor told me, basically there is nothing for me to take just the usual stuff which wipes you out and makes you more tired, like gapapentin, amytript, and lyrica so forth and so on which i have tried over the years and non suited me, so i am going to join a support group to help me with the pain management.

I lead a good life though, and have just enrolled on an on line learning course.

I make sure i eat well and i dont drink or smoke.

It is what it is, shame they ignored the first signs as i may have had the opportunity of DMD, as in 2004 i believe i had what was a relapse as i was off work for six months, but then recovered, and was sort of ok until 2006 until the next crash and burn.

I dont think my MS has progressed any quicker then someone younger to be honest hummm maybe they have the advantage of being offered DMD, where i wasnt thats my draw back i think.

I do know that when you get it later in life it is usually found more in the spine which mine is althought i have had two bouts of ON now and my tests show my brain is very slow in one eye the left which is the side i am weakest.

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Hi there

I was diagnosed with RRMS last year at the age of 59 I had been having some symptoms for about 7 years previously but not enough for me to bother seeing the Doctor with.

I have a hand tremor and some foot drop plus a few sight issues but nothing too bad thankfully. I am still able to walk for an hour but do use an ankle support now and I also go to the Gym twice weekly.

Hope fully my progression will continue to be slow.

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Hi Trev.

Yep, I’m an LOMS-er.

I was diagnosed May 2015, out of the blue. I’d had my knee buckle and give way in early 2011. Over time this eventually led to the start of ongoing out patients appointments in Orthopaedics. Knee X-Rays, Physio, Knee MRIs. Pins and needles began in January 2015 so Ortho decided it must be a trapped nerve in my spine and a spine mri was done. Nothing showed. Then in May after three episodes of paralysis in quick succession, I was in an ambulance, into A&E and admitted to a ward on Saturday. After a barrage of tests, I was diagnosed with RRMS on the Monday. There were two plaques showing on either side of the brain.

Diagnosed May 2015, I made a great recovery. It was easy to be in denial actually. I reverted to my normal self. So what, I had MS! It had no effect on me.

I was back in hospital in September with the same occurrence. That did the damage and I left hospital with a crutch. By December I was thinking about wheels. My mobility deteriorated very quickly.

By April this year I was needing a chair for any real distance. I saw my Neuro in une and she confirmed what I had already suspected. It is not RRMS, but PPMS. She told me she was pretty certain that it was that from the start, due to my age (55 at diagnosis) and how I presented. These last few months my right side is getting weaker all the time and my mobility is very, very poor. I tell myself I was lucky. I got to 55 before it reared it’s ugly head. I believe it was dormant for a long time and my Neuro told me I’d had it “for some time”.

My thought…personally, I believe it galloped along after my late onset.

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Mine started with Transverse Myelitis just before my 70th birthday. Numbness that spread from my toes to my armpits, and then receeded. The RRMS came the next year after several MRIs and an LP, and the first relapse came the year after that.

I went from walking very slowly to one stick, to an FES plus one stick to two sticks to a 3-wheeled rollator, to a four wheeled rollator, over the next six years. I have been SPMS for the last two years.

Your experience will almost certainly be different. After all, no-one of my age gets MS. Yeah, Right.

Geoff

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Thanks Dan, i read the article. My feeling is there is just not enough data available as LOMS are rare compared to the norm.

I appreciate your taking the time and trouble to find the link for me.

Trev

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Thanks for sharing your story with me. It is good to hear from you and the others that have so far replied.

Regards Trev

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Thanks for your reply. We share simalar symptoms.

Keep well, Trev

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[quote=Poppy6488]

Hi Trev.

Yep, I’m an LOMS-er.

I was diagnosed May 2015, out of the blue. I’d had my knee buckle and give way in early 2011. Over time this eventually led to the start of ongoing out patients appointments in Orthopaedics. Knee X-Rays, Physio, Knee MRIs. Pins and needles began in January 2015 so Ortho decided it must be a trapped nerve in my spine and a spine mri was done. Nothing showed. Then in May after three episodes of paralysis in quick succession, I was in an ambulance, into A&E and admitted to a ward on Saturday. After a barrage of tests, I was diagnosed with RRMS on the Monday. There were two plaques showing on either side of the brain.

Hi Poppy, thank you for sharing your story with me. I appreciate your taking time to read and reply. Yours along with the other replies todate make me feel less alone.

Trev

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Thanks for your reply Geoff. Thank you for sharing yur story with me.

Trev

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Hi. I was dx at 62 (I’m 64 now) though neuro thought I probably had it for 20 years. He was very keen for me to get started on a DMD and I’ve been on Tecfidera for about 16 months.

Louise x

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Poppy, thank you for sharing your story with me. It must have been a very tough time for you as it must still be. I wish you well.

Regards Trev

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Poppy, thank you for sharing your story with me. It must have been a very tough time for you as it must still be. I wish you well.

Regards Trev

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Hi Trev.

A few years ago my wife and I were running a guest house on the south coast. After 8 years of self employment, the business started to fail as the recession began to bite. We couldn’t afford to pay the mortgage and knew that we would eventually have to hand back the keys to the lender.

Within less than twelve months we lost our home, our income and I exhibited the first signs of, what was diagnosed as, PPMS at 55. The neurologist said I was too old but had to eat his words after a lumbar puncture.

A friend of mine repeated the adage that stress is a cause of MS.

It’s not the life we’d planned for. It’s not the life I would have chosen. But it’s the only life I’ve got.

I watch the news and read the papers and realise that my life could be an awful lot worse. I’ve just swapped one set of challenges for another. It takes time but, like grieving for a the loss of a life, I needed time to get over the grief of losing a lifestyle.

I’m really quite happy now that I’ve ended up with a life that is much simpler and peaceful than the one I expected.

I hope you find your way through to a simpler, more peaceful life too. As an added bonus you can meet some really nice people on this forum.

Yours,

Anthony

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Hi Trev,

I first showed symptoms in Oct 2012 when I was 50. Dx in June 2013 with RRMS.

Initially, I read several articles suggesting men Dx at 50+ would probably have a fairly rapid disease progression, so was concerned.

i started Avonex in early 2014 and moved to Tecfedira in early 2015 and whilst my mobility is deteriorating it’s happening slowly.

My advice would be to push for a DMD of your choice ASAP. The treatments available are constantly improving and anything that slows the disease down will give you a better life for longer,

Many people describe MS as a journey and like all trips you can only take one step at a time, so take those steps don’t worry about the future it’ll be here soon enough.

Good luck

Adam

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Hi Trev

My story is much the same as AB1707

First symptoms at 52, second relapse and diagnosis at 54. I am now 56.

Following diagnosis, I did two things which I think have made a difference. I started DMDs and I stopped work (I was lucky to be able to do that). Since starting DMDs I have had no further relapses and since stopping work, the reduction in stress has made a huge difference to how I feel day to day.

The neuro told me that, statistically, my MS could progress more quickly than average because of my age. But when I consider how broad the spectrum of disability is with MS, I just take it that anything could happen, anytime, or not happen.

In the meantime, my approach is to do everything I want to do whilst I can. I also have the benefit (most of the time) of not doing things that I don’t want to do.

MS has caused big changes in my life - but in many ways, these are positive changes.

Best wishes to you - and to everyone

grumpy

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To Mr Grumpy, AB1707 and Albrecht Durer.

Thanks so much for sharing your story with me and offering advice. It has been really helpful hearing from other LOMS’s like me. Anymore out there?

regards Trev

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