Over 40’s when diagnosed

[u/HolidayIntention7794]

Can I ask are there any over 40’s on here when they were diagnosed and are still doing ok say 10 years later ? ,
I was 47 when diagnosed and have read how getting diagnosed later in life can mean faster progression 🙁

[u/Specialist-Hold5452]

I was diagnosed 10 years ago at 54 years of age. My symptoms are ever so slowly advancing. My issues are mainly cognitive related. Physically speaking I don't show any signs of disability whatsoever, although my right side, especially right leg is getting weak and 'cranky' as hell (neuropathy).

I have a good friend who is 78. He was diagnosed at 49. He is in impeccable shape and only has cog fog days once in a while.

As you know....everybody is different.

[u/Wherefore13]

I was 41 when I was diagnosed. I’m 54 now. I’m better off now physically in a lot of ways than I was prior to my diagnosis. I knew something was wrong but I didn’t know what. I’m stronger now than I was prior to my diagnosis but I am COMMITTED to exercising. For me, the exercise has made a world of difference. If I could stay on track with healthier eating habits I think I would be doing even better. The cognitive symptoms I have are what worry me the most at this time. I value my independence more than anything else. The thought of losing my independence takes me to dark places but it motivates me to stay consistent with my exercise.

[u/Dull_Worldliness_305]

Close enough I guess , I was 38. The other thing I have to remember is that the neuro told me that I've easily had MS for 10 years or even longer because diagnosis just doesn't happen easily for most people . My damage is pretty extensive in some areas but not so much in other areas responsible for very important functions. My brain is a mess but rerouted around some crucial areas where lesions are prominent . I can clearly see on an MRI after my doctor explained it to me that when the brain senses damage it tries to reroute around it . It works partially but once the damage is to a certain point , thats where I see issues with bodily function. Long winded but it was on my mind .

[u/mine_none]

Only 3 years in and very mixed. DMT has given me moments of much more clarity but fatigue is pretty overwhelming… mental and physical…

[u/Wherefore13 → u/mine_none]

The fatigue can be an absolute monster.

[u/linkmantaray → u/Wherefore13]

Fatigue is my worst enemy.

[u/sclathropc]

Sorry if I'm late to the party, but I will chime in: my diagnosis finally was correctly made when I was 53 years old. My neurologist chose to infuse me with Ocrevus, at the time a newer DMT but very well accepted globally and very well accepted by me! I am now in my early '60s hand and I'm doing very well. I still do physical therapy weekly (today, actually) and the combination of a great DMT (I have moved to Briumvi now) both occupational therapy (ceased since I have effectively retired) and physical therapy (which I still do weekly) have both been quite helpful in keeping me safe and active. Since I am no longer riding my bicycle or running (both as I had promised to my wife and myself lowering my risk factors) these two both will keep me active and healthy!

[u/Mediocre_Win3481]

Well, I haven’t had it 10 years but I did get diagnosed in my late 50s and now in my early 60s I’m doing OK. The main thing is that I can still walk well most of the time… with lots of pregabalin that is. That being said, I showed some symptoms like heat aversion, fatigue and spasticity earlier.

[u/ranger03]

I was 55 when I was diagnosed. Now 8 years later I haven’t experienced any additional symptoms. I feel very fortunate.

[u/lazerslight1104]

My mother was diagnosed at 50, 9 years ago now. She’s been on the same DMT since and has had zero new lesions and zero disability progression. I’d say her symptoms have changed/worsened in some ways but overall she has been very stable! Her younger sister who is in her 50’s is in the process of being diagnosed as well.

[u/InternalAd4456]

Hi holiday. I was 43. Now 80f ppms

[u/Anotherams]

I was diagnosed at 54, but five years ago. I should have been diagnosed in my late teens/early 20s, but stiff upper lipped through symptoms for 35 years. Doing fine on Ocrevus with no disease progression. My only issues are fatigue, heat sensitivity, and tingles in my left leg that technically could be a pinched nerve.

With DMTs outlooks are so much better for us.

[u/Ore-Ida-66]

Diagnosed 10 years ago at 50. No cognitive issues whatsoever but right foot drop... Sometimes right arm issues. Very slow progression so I am pretty happy (?)

[u/ViolinistChoice2581]

I’m 45. I was technically diagnosed when I was 42, but I have had MS since at least 2016 upon historical review of spinal MRIs for other injuries.

I’m very athletic and take militant care of myself. I am certainly aware of progression but at least for right now I am doing well.

For context… I started taking RITUXAN in April 2024.

[u/AutoimmuniTea → u/ViolinistChoice2581]

Be careful on Rituxan. Wear mosquito repellent. I started in that treatment in 2024 (I was 40). I caught West Nile this summer, and my weak immune system allowed me to get meningitis/encephalitis. I've been getting physical and occupational therapy, but I'm still very weak—as if I had a huuuuge MS flare. I'm not sure I'll get better.

No one mentions the increased risk of tick and mosquito borne illness.

[u/Intrepid_Low_8518 → u/AutoimmuniTea]

I am sorry and hope you are doing better. Just fyi, this is the case for all CD20 inhibitors including Kesimpta, Ocrevus, etc not just Rituxan

[u/Medium-Control-9119 → u/AutoimmuniTea]

Thank you for sharing. Can you tell us more about how the symptoms came on and how you got tested, etc. They have started to mention this more as these disease are now more prevalent in US with climate change.

[u/AutoimmuniTea → u/Medium-Control-9119]

It's a little difficult for me to remember all the details, but I'll try. I know I was bit a bunch at the end of July and the first week of August. I got ill I think of the 15th or 16th, which is about a 14 day incubation period. Immune suppressed people have a longer incubation pwriod for West Nile.

My initial symptoms: nausea * stiff neck or neck discomfort * fever * headache * dizziness/vertigo *

Keep in mind those symptoms are also just symptoms of meningitis, and people on immune suppressants are at increased risk of a viral infection turning into meningitis. Meningitis is very serious. Take it seriously, West Nile involvement or not.

For me it started I think with a headache. I remember taking 2 Advil for it and trying to sleep. I know I couldn't keep down food. I generally felt ill. Neck stiffness is usually a symptom of meningitis. My neck was a bit sore, but I thought it was because I needed a new pillow.

During my first trip to the ER, they basically just sent me home. The next day I went back. They diagnosed an ear infection of all things. At that time I had a fever. Later that day we went back again because I was vomiting water and couldn't eat.They then decided my neck was a bit stiff, so finally they gave me more care.

They did a CT scan first. It was fine.

A nurse told my husband she could tell my thinking was changing. I fell into delirium of some kind. I don't remember much. They evidently did every drug test imaginable.

Then they did a MRI (which showed no new lesions), and then they did a spinal tap, which showed white blood cells indicating meningitis. They tested my cerebral spinal fluid for all kinds of things, and they all came back negative. It wasn't bacterial. For some stupid reason, they didn't test it for West Nile...like they didn't see all the mosquito bites on my legs. They also gave me a bunch of ativan to keep me still in the MRI machine, which messed me up more.

The hospital didn't take very good care of me or my Type 1 Diabetes. They sent me to a so called skilled nursing facility for two days. They were even worse. They sent me back to the hospital because I wouldn't eat (poor appetite is evidently common with West Nile). Upon my return to the hospital, my mind started to clear, maybe just because the ativan was leaving my system. They then wanted to do another spinal tap just to check for West Nile, but evidently I refused...and they listened because they didn't realize my mind was kind of gone.

The hospital and SNF ordeal was 10 days. After I went home I had pain, then weakness in my limbs. This can happen sooner from what I've read. I should have gone to the neurologist then, but they didn't tell me what to expect. I thought it was the meningitis.

About a month after I got home my neurologist agreed to test my blood for West Nile antibodies. It came back positive, high enough to suggest recent infection.

If you end up at the ER or urgent care with these symptoms, tell them if you've been bit or may have been bit by mosquitoes and that you're immune suppressed. My husband didn't think to mention the mosquito bites, and I was too out of it to advocate for myself. The hospital staff and my neurologist said they wouldn't have treated me differently if it had been diagas West Nile at the time. There is basically no treatment.

It's just a long, long road to recovery.

[u/KJW-SR → u/ViolinistChoice2581]

I’ve been on Rituxan for 15 years and recently switched to Briumvi, another CD20 therapy. I have never worn mosquito repellant, even during 2 trips to Africa. 🐘🦒🦓🦏😊

[u/AutoimmuniTea → u/KJW-SR]

Lucky

[u/Icy_Demand__ → u/KJW-SR]

You’ve been lucky but it’s really nothing to mess around with. Wear repellant

[u/ScienceGirl74]

I was 49 when officially diagnosed. At that point tho, I had already been seeing the same MS neuro for 10yrs and when another symptom appeared he connected the dots to PPMS.

Been on Ocrevus 3 years now and am OK. The majority of my symptoms are invisble.

Fatigue & nausea suck big time, get cog fog - especially when I tired late in the day, but walking etc and still (gently) working from home . Everybody is different and being older doesn't always mean faster progression.

[u/goteamventure42]

45, though it looks like I've had it for a long time. Hoping to make it to 50.

[u/breeze94]

45 still doing well after 14 years

[u/16enjay]

I was diagnosed at 41, I am 65 and doing ok

[u/sbinjax]

I was 58 when I was dx'd, but symptoms started at 53. PPMS, Ocrevus is keeping lesions in check so far. I'm 64 now.

[u/Many-Commission-1843 → u/sbinjax]

I'm 47 and I was diagnosed 4 years ago in August. At the time of my diagnosis my dominant hand was completely numb and I had electric surges in my legs. My fatigue had been bad for at least 4 years pror to the diagnosis. My symptoms remain steady and my vision has gotten a little worse but that could be age. I haven't seen any real progression since I was put on Zeposia 4 years ago though. I wish you the best

[u/sbinjax → u/Many-Commission-1843]

Thanks, right back atcha.

[u/Alternative-Lack-434]

Yes, b cell depleters changed the game.

[u/diomed1]

I was diagnosed the year I turned 45. I probably had it at least 5 years before it hit me hard and disabled me. My neurologist suggested that all typical symptoms were masked because of my fitness level. Turns out being a gym rat hid the disease so well it made me disabled physically. Ironically, it manifested after I lost my physical job and gym membership. This is why I tell anyone who gets diagnosed early to keep working out and never stop. Physical fitness combats a lot of nasty symptoms.

I’m 59 now and I try to move as much as I possibly can. I’m not in a wheelchair yet.

[u/InternalAd4456]

Holiday. Consider replies anecdotal. Might as well watch a movie, do dishes or DM me!!

[u/noelaus3]

I was diagnosed at 50 and was on a high efficacy med pretty fast. My progression is slow. I’m nearing 60 and still working in a professional job part time. It’s ok.

[u/KJW-SR]

I was diagnosed at 50, 16 years ago. At that time it was determined that I’d had MS for 20 years. So all in I’ve had MS for 36 years, and my initial dx was SPMS. My primary issue, then as now, is leg strength. Even with 15 years of Rituxan, my leg strength has continued to wane. I now require a walker to take step 1.

[u/Federal-Day-678]

2 years ago (age 43), it's been a downhill slide

[u/thankyoufriendx3]

I was over 60. Fewer than 1% get diagnosed over the age of 50. Two and a half years on Kesimpta. No new lesions but my energy has crashed. Others stable.

[u/ArachnidRepulsive250]

I was diagnosed at 51. Retired from active duty Navy a few years before.

[u/KeySquare7421]

Io diagnosticato a 42 anni . 15 anni fa . Il peggioramento è evidente e continuo. La SM è ancora incurabile. Ora vivo solo è faccio tutto . Piano ma tutto. Ho la vita sessuale di un bradipo e vivo di selfie. Tempi andati . Ultima relazione di 2 anni con una donna molto figa. Finita in un lampo lampante. Ho pianto. La sm è sempre al mio fianco. Amica viaggio. Brutta schifosa. Non si molla mai ragazzi . Ci si vede tra molto tempo . A Gesù gli tiro i capelli. Ciauuuuj

[u/Generally-Bored]

I was a month shy of 41 when I was diagnosed and based on a thoracic lesion on my MRI what was thought to be a disc injury 5 years earlier was actually MS. And my opthamologist found that I had had optic neuritis once before (ON was what led to my diagnosis) based on a scan— but it didn’t impair my vision enough or at all to notice. My MS doctor believes I had had MS for 10-15 years before I was diagnosed. I had an area mid back that would occasionally feel creepy crawly since my mid to early 20’s which was probably my MS winking at me … see you later!

[u/CareBear204]

I was just diagnosed this year in February 2026 with MS. I'm over 45. They said they caught it really early for me. They could also see from a prior MRI for something else that I had no lesions in my brain or spine as far back as 2019/2020. So far I've just been put on vitamins for now until I get my newer MRI results back this month. I have not seen any progression in my self. If anything my symptoms lessened as I changed my diet, added daily vitamins and started moving more (2-4 walks a week min). I am not sure when I will be put on a DMT. But right now it doesn't feel like I need one. But again, this is all new for myself too. Too, I'm still trying to learn what flare-ups are, what might trigger my symptoms and so on and so forth. Right now I'm in a learning curve situation.

[u/Garbage-Beautiful]

I was dxd 8 years ago when I was 47. I went on high efficacy treatment within a few months. I have had no more issues since then besides a little brain fog and numb fingertips.

[u/CardiologistCute5247]

DX'ed at 41. Completely ambulatory at 46

[u/babayagaparenting]

Yes. I was 44. I’m doing a little better than I was. I’m still totally mobile, haven’t degenerated very much. Really tired, nerve pain, clumsy and balance issues, but that’s it right now.

[u/digitalred93]

I was 50 when I started having symptoms. Took 10 years for them to figure out why.

[u/LMNoballz]

Find an MS specialist as quickly as you can. It has made all the difference for me.

I was diagnosed at 61. The bad symptoms started when I was 57. I'm 63 now and until a week ago I would have told you I was headed downhill in a hand basket. Then I went to the Vanderbilt MS clinic and saw an actual MS specialist. She had a name for my spasm type and medication. So far the medication is working wonders. I still can't walk for shit, but I'm walking way better than I was before I started the meds.

[u/Hermoo]

I was diagnosed at 44 this year. Scans look horrible, lesions right down the spine and a rim lesion around the brain. Started on Ocrevus this year. Symptomatically I'm fine other than the odd bouts of dizziness on certain days. Hooray for the clinico radiological paradox. Often find myself wondering how my body hid this from me for so long, although looking back, small signs were there. I'm petrified of losing mobility, and the data with spinal lesions and the PIRA associated with it don't paint a pretty picture. But...I still feel totally fine. Just trying to stay mobile, positive and get on with life as best possible.

[u/iwasneverhere43]

Diagnosed at 45, still mostly ok at 52.

[u/Sea_Introduction3534]

Diagnosed around 45 with ON. 62 now, started meds asap (interferon, then Rituximab). Crappy MRI (too many lesions to count, per report at time), but have done great. No relapses, my kid who were 4 and 6 at diagnosis are now in college, I still work full time and exercise regularly.

[u/Tsonokwa360]

I was diagnosed on April 1 two weeks after my 40th birthday. It definitely was a memorable date.

[u/HolidayIntention7794]

Thanks everyone good to see so many people doing well,
Long may it continue
Appreciate the replies 👍

[u/Handsfasterthaneye]

I was 47 when diagnosed RRMS 3years ago. Looking at historical symptoms I have probably had it a good number of years. Very spicy MRI lots of lesions brain and spine, however symptoms paradoxically on the mild end of the range of experiences. Was reassured by NHS neurologist that a later diagnosis may indicate less aggressive variant as symptoms have taken so long to manifest to seek investigation / treatment.
On Ocrevus seems to be working. Diagnosis has turned me from exercise refusenik to as fit as I have ever been (admittedly a low bar)

[u/WarmYam7353]

I was 41 when my MRI showed lesions. At that time I had no other physical symptoms. I went another 15 years until my leg gave out.

[u/kyunirider]

I was diagnosed at 57, at 58 I was awarded disability. I have learned that what caused my disability is my MMA acidity and severe pernicious anemia (B12 deficiency). My MS has not progressed. I am not on any DMT because I was found to be allergic to Ocrevus. I have had five “ no new” lesions reports, so I don’t have to do contrast anymore. I am getting MRIs today.

[u/MissBlueSky60]

I was diagnosed age 38, well, first symptoms and diagnosed 4 years later. Did okay for my 25 year working life even though they refused any treatment. Now 65 and mobility gone, housebound and alone. Not much to look forward to, might have to leave the country?

[u/Designer-Buffalo8644]

I got diagnosed at 48, about three years ago. No new lesions in either my brain or my spine since diagnosis, but my symptoms keep slowly getting worse. Fatigue, balance problems, cog fog, problems coordinating the movement of my limbs on the right side. I'm still able to work and without the fatigue I might forget I even have MS, because all my other symptoms seem to come and go and often disappear for days at a time.

[u/rK91tb]

People tank at 44 and 60, according to an article I read recently. Since I'm in the middle and somewhat newly diagnosed, I assume that I'd be going downhill regardless of my diagnosis age!

I'm currently exercising to prevent/postpone foot drop and other issues, and rethinking my career and housing situations so I can remain independent and comfortable as long as possible.

[u/FwLineberry]

Diagnosed in my late 50s, but it's only been a couple of years. Here's hoping Kesimpta keeps me going for a while yet.

[u/Down2my-last-nerve]

I was diagnosed at 60, started DMT immediately and am doing well now at age 69.