Strange.

[frosty123]

Quick recap, 56 yr old woman diagnosed with MS 2 months ago, neuro doc said this was my first episode.

Over the years I have had quite a few weird, pretty severe illnesses, made him a timeline of symptoms, ( I have never been a big fan of Dr.s and generally have believed that most things get better on their own, with time, all resolved)
He dismissed them all as being unrelated to MS.

So...I went to the ophthalmologist/neuro yesterday because I needed new glasses and thought that was where I should go.

Very sharp gal, liked her a lot. Anyhow, she pulled up my brain MRI, and said yep MS, many old/new scars here.

What does that mean? I asked.

You have had MS for years, perhaps decades.

Mmmm, I guess it doesn't make any difference, except that I am grateful to be doing as well as I am, but it found it a bit strange.

Thoughts?

This doesn't surprise me at all--it's rare to "get" MS at 56. It sounds like you just toughed it out when you had mild exacerbations in the past. Hopefully you will continue to have a mild course.

[Diamond57]

Me too

I am a 57 youngster (HA! HA!) and was finally diagnosed in June. I went for at leas 19 years with some odd symptems and ilnesses. I was diagnosed in 1994 with fibromyalgia. Las August I was hit like a mack truck but finally got the diagnosis. I too just got new glasses with prisms because of my double vision. Strange at our age to be diagnosed. I'm excersising and next week begin light PT massage therapy. Missed this week because I had the wrong time put down on my calendar. (COG-FOG). ;D

Wishing you much luck!
Susie

[MSW1963]

I was told at age 40 that I was "too old' for a MS dx. Any MS doc who ascribes to the '40yoa is too old for MS dx' and ignore chronic ON, cognitive impairment, and unexplained UTIs for a 5yr period of time beginning in my mid 20s, no, I don't think so.

Based on MRIs, I have not progressed since a particularlly harsh exacerbation of cognitive sx's, rt arm paralysis, wall walking from balance and weakness, and diplopia. The MRIs associated with that exacerbation had 'too many to count' brain lesions, one enhanced. It was the last enhanced lesion since my dx in 2001.

I've heard so much unreliable info from general neuros, even one of the MS gurus who treated me briefly during my nearly 4yrs of chronic sx's, without a dx.

I suggest you have the neuro ophthalmologist send your report to your treating neuro.

It may be time to find a MS specialist, or a new on.

Best of luck

[Mamabug]

Yup. What Betsi said. I got MS at 39; was dx at 40. That is more typical.

~ Faith

This doesn't surprise me at all--it's rare to "get" MS at 56. It sounds like you just toughed it out when you had mild exacerbations in the past. Hopefully you will continue to have a mild course.

[J-Bo]

Dxed last year at 57. Also have a friend who was dxed in her 50s. For being unusual, we're awfully common, aren't we?

And like people have said here, I've also been told a lot of other nonsense and claptrap by neuros. Not stuff that's a matter of opinion, but things that are demonstrably false. How can this happen so often? And then they wonder why we seek out alternative treatments.

[Diamond57]

Yes....to JBO

[DogMa]

I was diagnosed in my early 60's and probably have had MS for many, many years. No doctor ever suggested this fun diagnosis until then.

[Thinkimjob]

The "average" age used to be 27, which was me, to a tee.

I had the odd cruddy episode long before that, bit of numbness, weird tingling etc, but I put it down to a sore back, crinked neck or fatigue, and I didn't go to a doctor. And it eventually went away.

Then the double vision turned up. You can't ignore that, really.
If that hadn't spooked the horses, I would not have had any trouble that would have sent me to a doctor until I was about 40.

[Diamond57]

Thinknmy job that was a good post and mad me laugh!!! I'm still laughing. Have a good weekend!

[J-Bo]

The "average" age used to be 27, which was me, to a tee.

What has it changed to, thinkimjob?

And I like the sound of "Goondiwindi" - I googled it, and found this:

The name Goondiwindi derives from an Aboriginal word meaning "the resting place of the birds".

...but you probably already knew that.

[Thinkimjob]

Apparently it's 34.
Goondiwindi is a pleasant enough place, and happily for me, very flat. There's only one hill.

They worked out a few years ago the Aboriginal word actually meant the birds were doing something other than "resting". Think "sitting" with an extra letter. (We're not letting on, though.)

[palmtree]

HA HA HA. I'll have to research the town.

[rsinger]

Strange

I was diagnosed at 60. Yes that's right 60 years old. Had many strange symptoms since I was 48 but never diagnosed. At 58 I had some serious tingling of both legs from soles of feet radiating upward to my thighs when walking only. I workout a lot and had to give up speed walking and the treadmill. Used the elliptical instead. Still no diagnosis was made even though there was a lesion in the thoracic area.

Because I had a mild case of polio in 1952 the doctors thought that's why there was a lesion on the spinal cord. I insisted that I had MS but the doctors wanted to do a wait and see approach . I agreed because all the symptoms disappeared and I was "normal" again after about 6 months .

Fast forward to 2012 . Guess what. New lesions on the brain. However no new symptoms.
This began the course of treatment. Went on copaxone, gilenya, and now on tecfidera. I might add that I was on nothing for almost a year.

Listen to your body. You know when something's not right.

[J-Bo]

Listen to your body. You know when something's not right.

That is so true. They told me for 5 years that I had idiopathic neuropathy, and I kept insisting that no, this is some identifiable, debilitating neuro-muscular disease like MS. I could just feel it, and I know that probably most of you understand that even if the doctors don't.

They worked out a few years ago the Aboriginal word actually meant the birds were doing something other than "resting". Think "sitting" with an extra letter. (We're not letting on, though.)

Haha thinkimjob. Coming from a city that starts with "pit", I can sympathize with unfortunate associations. (Apologies to William Pitt)