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- Multiple Sclerosis (https://www.neurotalk.org/multiple-sclerosis/)

- - age at dx (https://www.neurotalk.org/multiple-sclerosis/2508-age-dx.html)

what would be the "average age of dx, and what is the oldest at dx that anyone is aware of?,,,thanks in advance

I think average age of dx is between 20 and 40.

The oldest age of diagnosis? Ummm.... on autopsy. Many many people were diagnosed after death on autopsy when they discovered their lesions then.

I was 2 months short of 40.
FWIW
-Susan

I was 43 when dxd PPMS. The docs at Mayo told me they had initially dxd MS in patients as old as their 70s.

Why are you interested?

Quote:

Originally Posted by wannabe (Post 18376)

The oldest age of diagnosis? Ummm.... on autopsy. Many many people were diagnosed after death on autopsy when they discovered their lesions then.

I'd have to do some digging to figure out the prominant Neuro in the US that confirmed this, but according to him, apparently 8% - 10% of the general population has MS and is never dx until autopsy. So you are correct!

I have heard of people dx in their mid-fifties, but that was the oldest living persons that I've personally read of.

Cherie

doc is leaning that direction, i think he is nuts...at almost 56....with no real sx (not explainable in another way....) thanks!

There are lots of us around who were dx'd in our fifties. I got a surprise dx at 52 and had probably had MS for 30 years.

DX at 42 but I now know I had it at 39.

Dx'd at 42 but symptomatic at 24.

Dx'ed at 46 but now I know I have had it since I was at least 31

I just got this from Doctor's Guide:

Quote:

DGDispatch

Age Should Not Deter Multiple Sclerosis Diagnosis:

Presented at ECTRIMS
By Bruce Sylvester

MADRID, SPAIN -- October 1, 2006 -- In a new study of patients diagnosed with multiple sclerosis (MS) after the age of 60, nearly half of relapsing patients with relapsing-remitting multiple sclerosis (RRMS) and patients with clinically isolated syndrome presented with signs of inflammation on magnetic resonance imaging (MRI).

This finding suggests that the disease course depends on the inflammatory component of MS and not just age, said researchers who presented the findings here on September 29th at the 22nd Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS).

"We have found that persons over 60 can have active relapses, emergence of new lesions and signs of inflammation just like people in their 20's," said lead investigator Robert Bermel, MD, fellow, Cleveland Clinic, Cleveland, Ohio. "So these older patients are potentially candidates for treatment. But clinicians have been hesitant to make the diagnosis in older people."

In this retrospective chart analysis study, the researchers identified patients who had been diagnosed with MS at or after age 60 and evaluated at a tertiary referral center over the last 5 years. The investigators reviewed each patient's chart to confirm the diagnosis and to identify clinical, laboratory, and imaging characteristics of each subject.

The researchers identified 111 cases, with a mean age at diagnosis of 64 years (range 60-76; 15 were over 70 years), a mean duration of symptoms prior to diagnosis of 9.8 years (age at symptom onset 8-71; 47 developed initial symptoms at or over 60 years). Women made up 67% of the cohort and 90% of patients were Caucasian.

Subjects presented a variety of forms of the disease: relapsing remitting (n = 37), primary progressive (n = 35), secondary progressive (n = 26), clinically isolated syndrome (n = 9), and progressive relapsing (n = 4).

Two patients with relapsing-remitting MS showed biopsy-verified MS. In those cases where an MS specialist reviewed the patient's scan, 86% of brain MRIs showed changes typical of MS, as did 80% of spine MRIs. In those cases when gadolinium was administered, 46% of subjects with relapsing-remitting MS or clinically isolated syndrome demonstrated gadolinium enhancement, and 75% of all subjects showed oligoclonal bands or elevated immunoglobulin G index.

At diagnosis, 39% of subjects were mildly disabled, as demonstrated by an Expanded Disability Status Scale (EDSS) score less than or equal to 3), and 34% needed a walking device or were non-ambulatory (EDSSgreater than or equal to 6.0).

"MS in older adults may be under-recognized and accurate diagnosis is often delayed by many years," the authors concluded in their abstract. "Some patients have symptom onset at more typical ages, but a sizable proportion have onset after age 60."

"Nearly half of relapsing patients (RRMS and CIS) presented with inflammation on MRI, which suggests that the disease course is dependent upon the inflammatory component of MS and not just age," they wrote.

"We now believe now that age should not bear upon diagnosis," Dr. Bermel added.

[Presentation title: Active Inflammation Is Common in Very Late Onset Multiple Sclerosis: Characteristics of 111 Patients. Abstract P575]

Diagnosed at 31, but symptoms started in my late teens.

(age 47 now, and still doing relatively well).

Cherie

Thanks Agate, for posting that.

Even though I was DX at 36 with onset of SX at 24, I get angry when the cutoff date for trials and such, is usually 60. As if, if you're over 60, fuggeddaboudit. :mad:

Well, I'm in the 60 something group, and I'm not gonna take it anymore..:p :p :p ..razzberies times three atcha.;)

I was dx'd at 25 but can take symptoms back to early teens and *maybe* farther.

When I was dx'd the average ages were between 20 and 40 but as Agates post shows those numbers are no longer correct.

Dx at 32 - but slurring (before wine o'clock:p ), memory loss, bladder problems and lack of balance and coordination years before then.

Lyn

When I first saw my regular doctor about all the weird symptoms at age 42, I said offhandedly, "At least I'm too old to get MS!"

Because I'd read that you get it between 20 and 40, and really I knew nothing about MS.

She looked at me and said, "You're never too old to get MS."

She was a brand-new doctor--I think I was one of her first patients in the clinic--and I thought scornfully, what does she know? She's still wet behind the ears! Plus, she wears high heels and dresses; how serious a doctor can she be?

I just looked at her and didn't say anything more, and MS never entered my radar screen until the day I saw the second neurologist.

I'm ashamed now of what I thought of that young family practitioner! She was right, of course.

Nancy T.

Dx'd at 47 -- a horrible day :(

DX'd at 41, but symptomatic at 20. Now 46 and doing well with the MS, I think.

diag. at age 42....immune system went into a funk at age 26.....it was kind of off and on from that point. I almost went undiagnosed at 42! I had a clear MRI at that time and in 6 mos. the doc re-ran the MRI and lesions showed up.
By this time I was feeling better, so hard telling how long it would have taken for someone to do a MRI again. Thank goodness my Neuro did!

http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_DocSum

Neurology. 2006 Sep 26;67(6):954-9

Is late-onset multiple sclerosis associated with a worse outcome?

Tremlett H, Devonshire V.

Department of Medicine (Neurology), Rm. S159, 2211 Wesbrook Mall, University of British Columbia, Vancouver, BC V6T 2B5, Canada. tremlett@interchange.ubc.ca

OBJECTIVE: To describe the characteristics of late-onset multiple sclerosis (MS) (LOMS, 50+ years) vs adult-onset MS (AOMS, 16 to <50 years) and examine prognosis and associated risk factors. METHODS: Patients with definite MS, onset prior to July 1988, registered with a BCMS clinic before July 1998, with at least one Expanded Disability Status Scale (EDSS) score, were selected from the longitudinal population-based British Columbian (BC) MS database.

Clinical and demographic characteristics were compared between LO and AOMS. Progression was measured as time to reach sustained EDSS 6 and potential risk factors examined were sex, disease course (primary progressive [PP] vs relapsing [R]), and onset symptoms.

RESULTS: Of those eligible (n = 2,837), LOMS comprised 132 (4.7%), with PPMS predominating (54.5% vs 10.6% in AOMS, p < 0.0005). Motor onset symptoms were more prevalent in LOMS and sensory and optic neuropathy more prevalent in AOMS (p < 0.0005). AOMS averaged 27.7 years (95% CI: 26.3 to 29.1) to EDSS 6 from onset vs 16.9 years (95% CI: 9.0 to 24.8) in LOMS, p < 0.0005. However, AOMS was associated with a younger age at EDSS 6 (58.4 years [95% CI: 57.1 to 59.6] vs 71.2 years [95% CI: 65.2 to 77.3] in LOMS, p < 0.0005). There were no differences in progression between AO or LO for those with PPMS (p = 0.373) or R-MS (p = 0.438), although considerable variation was observed.

CONCLUSIONS: Late-onset multiple sclerosis (LOMS) is not necessarily associated with a worse outcome: first, progression in the primary progressive or relapsing patients differed little between late-onset vs adult-onset; secondly, those with LOMS were older when reaching Expanded Disability Status Scale 6. The disease course has a far greater implication for disease prognosis than the presence of LOMS.

PMID: 17000960 [PubMed - in process]

dx'd at 23; symptomatic at 19 (36 now).

Doug

well age is just a number,, I was 23, newly DXed with Steels disease,, then 2 yrs later, DXed with MS,, conquensident ?? could be,, my primal doctor told me,,{ his daughter has MS } he thought all along, when I was being tested in Rochestor, it was MS. all along,, I handle my MS my way,, seems to be working,,:p

guess i am winner (?) so far...had first symptoms and DX at 57.

am progressing at fairly rapid pace which follows that theory also....I am 64 now

My mother is the family member with MS. She was diagnosed at age 53, and is now 78. PPMS is more common in those diagnosed after the age of 45 years, and this is the type she has. Her EDSS is 8.5.

(KLD)

i was dxd at 42. now 57.

Let me think- when i was dx, or when i HEARD him finally? 40 when told, 43 when I finally heard/listened/accepted.

I was 40 at the time. I'm 45 now.

Hi Ceci...Welcome!! Nice to see you again.:)

Quote:

Originally Posted by SallyC (Post 22438)

Hi Ceci...Welcome!! Nice to see you again.:)

Backatcha Miz Sally!

Little Miss Average

Nothing exciting here. First MRI at 33, 35, 37 now. First symptom at 21 (it went away, and I forgot all about it!)

I have seen posts at varoius websites from teenagers dx with MS but not sure about upper age groups!

Natalie

Oh if anyone remembers I used to post on braintalk as Genetic Mutant, I use this one on another forum, decided it was much nicer sounding although as far as my family and my problems are concerned, either I was adopted or I have mutant genes!!