Hello all,
Just out of curiosity I would like to ask you how old were you when you have been diagnosed with MS?
I am 41 and just being diagnosed xx
Thanks
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Hi Lina - I was diagnosed 2 months ago - was 61 then. Noticed there’s a variety of sges on this.
I hope summer being nice to you.
Gerard
Hi Lina
I was 66 when I was diagnosed 5 years ago.
Moira
58 in Feb’21. Having been misdiagnosed for years, it’s likely I’ve had PPMS since I was about 50.
If replying to this, it’s worth making the distinction between RR-, SP- and PP- MS. It would appear RR can occur from late teens into early 30’s whereas Progressive forms kick in in 40’s or 50’s. There are exceptions, of course.
- Apparently 85%+ of MS-ers have RR-type, which for most can be treatable and at least manageable.
- Women are twice as likely to contract RR- as men.
- Progressive MS is more like 50/50 M/F and is much less treatable, if at all.
- At best it can be slowed down but for today’s meds, Progressive MS still has to show evidence of inflammation activity, whereas many S/P-MS are “smouldering” whereby there is NEIDA (no evident inflammatory disease activity) and although symptoms are clearly worsening, progression is not getting picked up on successive MRI scans.
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Age 29 1991 RRMS then 45 SPMS
Mick
Hi Lina,
I was diagnosed 8 years ago - when I was 11.
Hope all is well.
Prakriti
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Diagnosed 2 weeks before my 42nd birthday 10 months ago.
My neuro thinks my onset was aged 39. X
Sure I had Symptoms going back till I was 30, maybe younger, but it wasn’t until they came in groups and more frequently that I got Disgnosed with RRMS a week @34, 6 days after my birthday eight years ago
And you Lina?
I was 55. Partial right side paralysis, A&E, admitted and diagnosed in one weekend May 2015!
Hi there
How do you know which one you have
I’m 53
Started with issues on 01/05
That’s when symptoms impacted but possibly now think some wobble periods last year but nothing that impacted too much
I don’t know what mine is but I’ve not had a day since 01/05 that I’ve not had symptoms that impact
Pain , leg weakness, pins and needles
Headache , heat spasms
When the hits happen
My toes curl and my right hand
So painful
What do you think ?
Shelly
Lina,
I was diagnosed in 2013 after nearly two years of investigations. I turned sixty that year.
Neuro said I’d had it for over thirty years. The first recognised episode (in hindsight) was in 1978 when I was 25.
Happily, my episodes (relapses) have been few and far between.
Ben
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Hello Lina, I was 54 when diagnosed. But I had it probably 10 years before that.
I was 27, and I’m 35 now
I found it very difficult, but I had good support from family and the NHS
The early days are terrible, when everything seems so unknown, out of control - but it evens out
Still, some days are good and some are bad…but that’s life when you’ve got MS
Edit;
I have RRMS and the NHS gave me Lemtrada after I had already lost my job (civil service) and was about to have to move flat
I had symptoms from when I was 25 (dizziness, optic neuritis)
I am stable now. I had to complete 5 years of monthly blood tests after my last Lemtrada infusion (my last one was in January 2020, just before the covid kicked off…luckily)
I won’t and can’t take back what I said about it being hard in the beginning, but it’s also true what say about it after
I took the Lemtrada very well (I was treatment naïve) and haven’t had a relapse since 2014 (the year I was diagnosed)
I can’t talk the NHS up anymore, they were truly amazing. My consultant neurologist (Who is now a professor!) really sorted me out….and the after-care was excellent…they didn’t miss anything out
Keep the faith, it’s hard at first but it does make more sense eventually. You learn what works for you what doesn’t
Sending you many feel good and keep strong wishes 
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I have really surprised how many people are 50 + when diagnosed. I was told really not comman when 50 +
Lina, I’m curious now. Do you have ms yourself, or are you compiling a survey report?
Because old people are expected to get tired and fall over, it is not in the GPs young female stereotype. When I started off and asked GP casually about my walking range decreasing his simple advice was to exercise more. Even though This didn’t work and I fell over and broke my wrist MS never crossed my mind. I suppose I was wondering about Parkinson’s as my mother has it, but doctor very clear my symptoms did not fit. With what I was presenting with it was simple to diagnose old age (the horse option) rather than MS (the zebra option). I was diagnosed after turning up at the GP and falling over on the way in and falling over on the way out. Sent to the Ambulatory Care Unit and had innumerable blood tests X-ray MRI and lumbar puncture and diagnosis that day followed by a short stay with steroids.
My suspicion is there are a lot more people developing MS later in life but they are not being diagnosed.
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You should have been told what type when you were diagnosed. Maybe in a letter you had?
If you’re on any DMT medication you can probably figure it out as some are only for RR and others for the progessive kinds.
Relapsing remitting is when you have attacks that gradually ease off, Remission. May not completely heal and leave some of the symptoms at a weaker level.
Progressive kind is when symptoms just keep getting worse without any remission.
RRMS @ 50 in 2018.
I haven’t had a letter
Neurologist just told
Me at 2nd meeting post all MRI scans
Started steroids 5 days and gabapentine and then he left
Waiting now for another neurologist to pick up my care
Next appointment end of sept
Feels a long wait
No DMT as I haven’t been referred to MS specialist service
Frustrated
Shelley