Hi- I have been referred to the neurologist by my GP for suspected MS. I am 59. I have done my research and my symptoms match late onset MS with little doubt ( over balancing, clumsiness, intention tremor as well as migraines that I’ve had for years but recently have worsened. ).My symptoms came on about 10 weeks ago and haven’t improved which seems to match with late onset MS as well. I have researched this diagnosis and I am so scared by what it says especially that there is a fast transition to disability. I actually feel sick with worry and can’t sleep.Is it right that the older you are, the faster the transition is to significant disability?Having worked in my job with people with advanced MS who needed full care and required hoisting I am so scared this is going my fate. Am I right/.what are the odds of this? My mum is 85 and no health issues but it seems to me from the information that I will die by my mid seventies. Again, is this right? I was previously fit and healthy apart from migraines. Is late onset MS the worst type you can have? It also seems that for most with late onset MS that Disease Modifying drugs to slow progress are not available/ suitable as there’s usually no active inflammation for it to work on. Is this right?
So in summary I am querying -
Is late onset MS the worst type ?
How long before someone with it looses independence in self care and unable to perform own transfers to get in/ out chairs, bed etc?
Will my progress be faster because I am 59 rather than say 49?
At what age does someone die on average?
How often are Disease Modifying drugs given to those with late onset MS?
Sorry for the long post but very grateful for any answers as all these questions are hard to find.
Thank you for being there to help.
Hi,
I am so sorry you are going through this nightmare.
It sounds like you are at quite an early stage in terms of getting to a diagnosis. Of the symptoms you describe, some of them could be MS symptoms, though they could also be lots of other things. Some sound less like MS. For example, I’m not sure that migraines are typical of MS. In fact, when I was diagnosed they wanted to exclude migraines first as a (more common) “alternative”. Migraines can also cause brain lesions.
MS is most commonly diagnosed in people aged 20-50, though it can happen at pretty much any age. I got my diagnosis at a relatively “old” age (for MS) of 45. Like you, I read everything online, and I was in a complete state through the whole, long process of diagnosis… Then when things pointed towards MS I decided I must have progressive MS. I had read the things you’ve read about being diagnosed at an older age… In fact, it turned out that I did have MS, but the neurologist said “relapsing remitting”.
A relapse in MS can last for months - not just 10 weeks. The one clear relapse I have had lasted 4 months. They don’t diagnose progressive MS, I think, unless you have had a year of worsening disability.
And while progressive MS is a more common at older ages, I think it is still true that relapsing MS is the most common diagnosis for all ages. Obviously I’m no expert on this.
If your GP has referred you, you probably haven’t had an MRI scan yet? I ask because they can’t diagnose MS without at least one scan. The diagnostic criteria require a certain type of lesion, and in more than one part of your brain/spinal cord. The neurologist will probably want to do a neurological exam to assess your symptoms (reflexes etc.) and send you for an MRI scan. Possibly two, with a gap between them. Being older will mean they are even more keen to check out alternative diagnoses in your case. So you’re unlikely to get a “yes/no” answer at that first neurologist appointment.
Let’s imagine you do have MS for a moment.
Is being older at diagnosis worse? I think the answer is mixed. Firstly, you have to understand that MS is a very different disease in different people. The average experience does not tell you much, there is so much variation. I think it is true that older age may be more likely to come with disability accumulation - our brains get less good at repair. On the other hand, MS is an autoimmune disease. As you age, your immune system becomes less “active” and so you are less likely to have relapses. Again, just my understanding - I’m not a neurologist.
You’ve worked with people with advanced MS… thank you. Those people, some of them on this forum perhaps, presumably got diagnosed decades ago, perhaps before any treatment was available.
Most of the current treatment for MS targets relapses. People can recover from relapses, over a period of months, but sometimes the recovery is not total. So preventing those relapses is important.
Some neurologists have suggested that eventually, as we age, we might not need treatment to prevent relapses any more. However, I’ve read studies where treatment was withdrawn from older patients, with very bad results. So for the time being, regardless of my age, with a relapsing MS diagnosis I’m keen to be on treatment. I found a neurologist who agreed and put me on a “highly-effective” treatment. For progressive MS, there is a treatment option for some patients, it’s not age dependent as far as I am aware.
It took me a long time to get my MS diagnosis, which I’ve now had officially for a year. When I was at your stage, I had all the same thoughts you are having about my future. And I still do. But life goes on. A year in, my health is about where it was, I have no MS symptoms most of the time. I work (more than) full time. Go on long distance hikes. And my main health issues are unrelated to MS. So I wouldn’t assume your life is about to collapse around you.
If you have MS, nobody can give an honest answer to your questions re. how long to losing independence. If you look you can find positive/negative prognostic factors - but again, these are averages. There is so much individual variation.
As for life expectancy, in the past, it’s been a bit shorter for those of us with MS. That figure may well be changing with the more recent drugs available, perhaps we don’t have the data yet. There is a lot of research ongoing in the moment focused specifically on progressive MS. If you have it, you may be able to join clinical trials. A bloke round the corner has MS, he’s in his 90s - so you can’t assume as 75 cut off. At the same time, people without MS don’t all have the same life expectancy either. So I wouldn’t attach too much significance to all this.
This post is already too long. But I suppose what I would say to you is that, even if you have MS, you will not always feel the dread and anxiety you do now. It will lessen. There will be bad days. But daily life will make you keep living and find ways forward. The diagnosis is a little like a bereavement in that regard. I think less about MS now than I did around diagnosis time.
If you’re struggling to cope and would like to talk by phone, feel free to message me.
Hi just to let you know I was formally diagnosed at 60 after 3 years of investigations .
My first MRI found many brain lesions and demylination and a couple in my spine , as well , all indicative of MS.
My Neurologist diagnosed me with probable “MS”.
I was given access to a MS nurse straight away and medication to help me with my symptoms but no DMT.
I had a lumbar puncture that was negative so this couldn’t confirm diagnosis.
It wasn’t until an MRI last year found a new lesion that I was formally diagnosed and given a DMT Copaxone.
My Neurologist was surprised that new activity was found given my age.
I have to say I’ve never had a relapse that I am aware of and my symptoms have remained unchanged.
I’m one year on and my latest MRI found no new lesions thankfully.
It can be a long and worrying process to diagnosis.
My Neurologist wont say what type of MS I have as he believes MS is MS and it isn’t helpful to label it.
I don’t think I fit any particular category to be honest and everyones MS is different.
I did find this site and MS Shift app helpful particularly at the beginning of my journey to diagnosis.
If you have any questions people on here are happy to help if they can.
One thing Ive taken from this is to not sweat the small stuff and to enjoy my life to the full.
I get out into nature as much as I can and I have a full and active social life with some adjustments.
Take care and let us know how you get on.
Thank you both for the time and effort to reply to me. Your advice has definitely helped me feel less panicky. I think I will sleep a little better tonight.
I see the neurologist this coming Thursday for my first appointment. I will let you know how I get on.
Dear Acbutler. I most certainly hope you are wrong ! I was older than you when diagnosed in my early 50s but still in the late age bracket. I am now 70 and still going! OK I can’t walk non stop for more than 10-15 minutes ( use a mobility scooter for anything longer) but I happily potter around the garden for maybe an hour without having to stop and 3 years ago I was up on our roof re-laying ridge tiles.
My mobility is decreasing slowly but I still enjoy life and have no intention of dying in my mid 70s unless of course I do something stupid and fall off the roof at 75! 
It used to be that on average people with MS died some 7 or so years before those without MS but those stats relate to the times before Disease Modifying Treatments ( I don’t think that there are any figures relating to people on DMTs which haven’t been around for long enough).
I was started on a DMT after diagnosis and am still on it (Avonex - one of the early and perhaps least effective ones )
So , if you are given a diagnosis of MS the. please take heart from the experience of this 70 year old guy and from what @claret57 and @Leonora say in their posts.
There is life after MS diagnosis. ( if you are old enough to have seen the Star Trek TV series then to borrow a line from Spock) Maybe not life as you used to know it Butler but it’s still life ! The attached photo is me on my scooter 10 days ago heading into the hills on a Scottish island - a different life but still enjoyable
Thank you Hankdogs for your encouragement. Much appreciated and love your positivity.
Hi! Just had to say ‘thank you’ for posting this photo - it’s made my day! I’m just reading this post with interest being diagnosed later (59). I’ve only just felt able to accept my current life with MS and your photo has shown me exactly what I want to do!! Oh, I do miss country walks and can’t wait to get out there again! Katie x
Hi @Katie345,
Go for it! The scooter in the photo is a Moving Life Atto. I chose it for its good ground clearance and it has taken me down some pretty bumpy and rocky paths. It’s pretty robust too. The down side is that with solid tyres and no suspension it’s not that comfortable on rocky bumpy paths, and there is only one motor in the single front wheel. I’m always on the lookout for the perfect scooter! I enjoy using the Atto though and probably push it a bit beyond the conditions it was designed for. Also, In places like the one in the photo I’m always a little nervous about the scooter breaking down , leaving my wife and I with the challenge of how to get myself and the scooter back to the car. It hasn’t happened yet though and as mentioned it does seem very robust.
Probably going on, droning on a bit but we have an RSPB reserve near us. It’s has wide smooth paths and there is something quite nice about sitting on the scooter, checking the path ahead is clear, and just enjoying rolling along , looking up at the trees and sky, listening to birds and relaxing ( I haven’t yet crashed into a tree while looking up at the sky )
Hahaha! Yes don’t look up for too long lol!!
Thank you for your reply. I’ll be looking at buying a scooter soon, so that’s very helpful.
Best wishes
Katie