This is a little off topic but this disease really is so confusing. I have 9 lesions and a few black holes but really no symptoms except the mild optic neuritis and mild dizziness at diagnosis and maybe fleeting vision problems once and mild problems with heat since then. I got diagnosed 18 months ago -- nothing has changed lesion wise over that time. I am still surprised when I hear someone only has 1 lesion but has lots of symptoms and troubles. I'm assuming we just don't see everything on the MRI? But why is it someone can have a bunch of lesions but a very mild case of MS????

I've only had one MRI, so I don't really know, but ...

I suspect I had MS back to my late teens, but didn't have my first CLEAR attack until I was 31 yrs old. They knew it was a lesion in my T-spine (Transverse Myelitis), but I didn't get a MRI.

I went into denial and ignored all my symptoms till I had the next Transverse Myelitis attack, 12 YRS later. They knew that was a new lesion though, cause the numbness pattern clearly indicated a C-spine lesion, not the T-spine one again.

My MRI showed 2 large spinal cord lesions (1 T-spine, 1 C-spine), and two or three "small" brain ones ~ that's it! Since spinal lesions of that size will cause symptoms (during inflamation, and beyond), I must have went 12 yrs between them.

The brain lesions could have popped up any time . . . but still that's not much.

I will be getting another MRI fairly soon, so it should be interesting. It's been 6 yrs now since the last one (4 yrs on LDN).

Cherie

Natalie: I've been paralyzed twice.

i was dx'd rrms in '03. i've had mri's each yr since (except for this yr) and they were all stable. 6 or so brain lesions and 2 c-spine.

i havn't had any flares but some gradual slow progression. last yr my dr said spms.

i'll take it. i'm still walking and driving.

Thanks for your replies, everyone. I guess there's not a real answer but maybe I'll give it a shot with my doctor. Just curious as to what they expect to see over time on the MRIs.

Seeing these replies though really did reinforce the "treat the patient not the MRI" phrase. Ironic that progression is measured in the RRMS phase as what the MRI says since it seems pretty clear that the transition to SPMS can happen without any kind of real warning on the films. Not that it definitely does happen that way or that everyone will definitely progress, just that it can happen that way.

my MRIs have not changed one iota in the six years since I was diagnosed. I have one tiny lesion in my brain, and a much larger lesion on my cervical spine. They have never enhanced, they have never been joined by any other lesions, and they have never gone away. My MRIs today look exactly as they did six years ago.

In the meantime, I've gone from having a slight limp in my right leg to having my entire right side rendered almost entirely useless by weakness and spasticity, which is now spreading to my left side. Six years ago I was able to walk for miles, even with the limp. Today I use a power wheelchair.

The moral of the story is that MRI images only tell a very small part of the total clinical picture of a patient. There is very little direct relation between lesion load and physical disability, what's more important is the location of the lesions. Don't get too hung up on whether you have more lesions than you had last time. Ultimately, it's your physical state that is the ultimate arbiter of how you are doing...

Hi, Bearygood

I'm probably not going to be much help

I had symptoms as a kid and dx'd at 25 without lesions. Never had another MRI until 2005 and that was just because I had some other things going on that might or might not have been MS related. I had numerous c-spine lesions and 2 brain lesions. Unfortunately, I have no idea when they actually showed up. None of them were active.

Never had an active leisons (new ones never showed under contrast), but haven't had a new one for almost 2 years.

Disclaimer is that there may have been a new one in my T-spine, but muscle spasms during the MRI made it tough for them to see if it was really there.

After the stability, a little worried about switching from copax to rebif. But the IPIRs got to be too much.

What really cracks me up about this is that the same neuro who will tell someone who is already dx'd that it is normal to not see new lesions for new sx will scratch his head with someone who isn't dx'd but doesn't have new lesions.

Take my case for example. I have had about a dozen brain lesions for the last 5 years. Because I haven't added any new ones, I can't get an official dx. If I was already dx'd, they would call me stable. He keeps waiting for new lesions to re-do some of the other tests looking for a change in those.

It just goes to show you that everyone is different and has different levels of disability regardless of what the MRI shows!

I was diagnosed with 4 lesions.
The next MRI at 6 months and two relapses showed more lesions. Third MRI "too many to count"

My last MRI showed "large lesions reduced in size, some lesions no longer visualized, no enhancing lesions, no new lesions"

I asked how many I had left and the doc said "We stop counting them after 5"

(he didn't get it when I asked if that was when cocktail hour started)

And conversely, when I was dxed it was on the basis of multiple brain lesions, (have no idea how many; upon me asking my MS specialist he said "I didn't count" ) but none were active and no clear exacerbation. Granted, I had Optic Neuritis but when I used the word "exacerbation" my MS specialist scoffed and said "you didn't have an exacerbation."

So my dx was solely on the basis of ON, brain lesions and my own recounting of history and sx -- and they were all things that might or might not be attributed to MS. Never any clear exacerbations (other than the ON?) and I'm not even sure my physical examination even registered on the EDSS. First year post dx MRI, no new lesions and none active -- about to go for the next one.

It's amazing how these doctors differ. I've always assumed it was the ON supported by existing lesions that cinched the deal for me but I wonder if a different doctor would not have rendered a definitive dx.