age at dx

Cherie · 10-02-2006, 09:12 PM

Dx'd at 42 but symptomatic at 24.

deb46 · 10-02-2006, 09:12 PM

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

agate · 10-02-2006, 09:19 PM

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]

lady_express_44 · 10-02-2006, 09:41 PM

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

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

Cherie

SallyC · 10-02-2006, 11:44 PM

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.

Well, I'm in the 60 something group, and I'm not gonna take it anymore..

..razzberies times three atcha.

Snoopy · 10-03-2006, 12:05 AM

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.

Lynn · 10-03-2006, 06:26 AM

Dx at 32 - but slurring (before wine o'clock

), memory loss, bladder problems and lack of balance and coordination years before then.

Lyn

Nancy T · 10-03-2006, 08:13 AM

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.