What's the LONGEST You've Gone with No New Lesions Presenting?
 

Years? Never?

I'm due for my second follow-up MRI since being dxed and I admit I'm a little nervous. I guess I've always presumed that it's unrealistic to think that there will never be new lesions but I know when or if I hear that there are, I'm understandably going to be upset. So...I'm curious to gauge the experience of others in this department -- # of years dxed and when (or not) new lesions presented.

What, realistically speaking, is dong well? Obviously, no new lesions is doing well but is there some sort of additional standard in relative terms since this is considered to be a progressive disease? (Does this make sense? :confused:)

Jim's last MRI, 2008, showed no active lesions. Prior to that he had an MRI in 2003 which showed one possible active lesion. So for five years he was active lesion free. Hope that made sense! lol He's had ms for 21 years this June.

I'll have an answer when I finally get to my MRI!

So, he had only one possibly new lesion or an active old one in the 21 years since he was dxed? And it was when he was considered to be SPMS so during the period he was RRMS, there were no new or active ones of which you're aware?

This disease is befuddling!

No no no, I'm sorry I confused that. I was just comparing the past six years because you asked what's the longest before new lesions presented themselves. His prior MRI's always had active lesions. Sometimes more than others but always active. He was dx'd SPMS after several years of not really knowing what form of ms he had. As a matter of fact, he was dx'd Chronic Progressive and then Primary Progressive before they changed it to Secondary Progressive. It was a very confusing time for the doctors apparently. :rolleyes: I finally made the neuro pick a stage and stay there. lol

But the past six years he's had no active lesions. In 2003 he went through a traumatic time going through kidney failure and seizures. Since then it's like his ms plateaued. It's like it shocked his body going through kidney failure but now the ms is stable. He still has the everyday symptoms of ms though, just it's not active and causing more damage right now.

I think it was the way I posed it that was confusing! I know that the progressive forms are not as associated with inflammation so new or active lesions would not really be expected. Your answer is interesting though, noting the period of SPMS but that also prior to that, he did have a lot of activity. Thanks for the info., Sandy, and I hope to hear more stories of any activity or lack thereof with timelines.

I think I get it... I'm on my longest new-lesion-free run, 3 years and counting.

But, I have graduated to SP in the past 6-7 years. Remarkably, my MRI is still mottled with the old ones and I do have spells of feeling worse, just not the 6-or-more-months stretches with a batch of symptoms that eventually let up.

This disease is so confusing, I know a gal locally who has one lesion, had one attack and has been fine since. She's still sensitive to heat and all that, but hasn't really had any notable attacks in about 12 years since dx.

I think it's Greta who has never even had an exacerbation at all.

MS is a TWO STAGE DISEASE
 

I went 6 years with no NEW or enhancing lesions showing. I think I am now in the second stage where loss of lower limb control shows up.

I am changing my supplement program to counter GLUTAMATE neurotoxicity and have added a "Calcium Channel Blocker" to my high blood pressure program.


:eek:MS is a TWO STAGE DISEASE!!!!:eek:

This paper in my web storage area covers the subject quite well.


http://home.ix.netcom.com/~jdalton/ms-two-stages.pdf

I have extracted the graphic from the above referenced paper so you see the elements of the two stages.

jackD

http://home.ix.netcom.com/~jdalton/two%20stage%20MS.jpg
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http://home.ix.netcom.com/~jdalton/two%20stage%20MS.jpg

First MRI in 1997, one lesion, brain stem. MRI in 1/08 showed the one and only lesion. So I am still clinically probable. My neuro has wondered if it really is MS since I have done so well. But all the symptoms persist. I just don't want anything to happen until I get to the age to collect social security. I don't want to have anything jeapordize my SSD. That's only 3 years left. This year I got my review for my SSD and passed so I hope I'm safe.

I haven't had a new lesion for awhile now (years). I think they're checking my c-spine on my next MRI to see if my old lesion is still the same.

I wonder sometimes if I'm mildly second progressive now because I don't have attacks anymore, but my fatigue gets gradually worse over time. Luckily though my MS is mild for the time being.

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 :Wave-Hello:

I'm probably not going to be much help :rolleyes:

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" :eek:

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":confused:

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

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" :rolleyes:) 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." :confused:

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.

Same here Beary-ON with NO previous symptoms.

I did have a facial injury in a pool accident that caused temporary nerve damage similar to Bell's Palsy, and the neuro took that as the first incident as disseminated by time and area of disability. It made me very angry because it had NOTHING to do with MS, and I felt he was just looking for anything he could write down to back up his diagnosis. Even my LP wasn't enough to back up diagnosis. I made him write in my records that I disagreed with his interpretation of the facial injury and had my GP write a letter backing that up.

It made him wait for the second relapse...which came in three months...and sealed the deal, but it got me past my start date of my disability insurance policy!! :p

Me too, RW. I walked away with "You've probably had MS for a very long time." Okay, maybe -- but maybe not.

After dx I would tell people that the shortest route to an MS dx is ON if there is evidence on the MRI to support it. I still feel that way for the most part and have even helped one person finally get a dx because of that BUT I have since seen many cases similar to mine where the doctors have not been willing to render a dx, I think possibly because of the absence of relapses.

An LP was never even mentioned...not that I'm complaining! :p

3 years diagnosed and no changes in my brain MRI for the past 2 years. I do have spinal lesions (t-spine) but my neuro doesn't generally do follow ups on spinal lesions simply because they are harder to identify. Heck, there is a lot of stuff compacted in that small space.

I agree with those who said that here is little or no correlation between lesion load and disability.

I have never known how many lesions I've had, but I do know that I am SPMS, and have had no exacerbations since my last MRI, in 2000/2001?

I may have one or two or a million lesions added, in the last 6 yrs, on LDN, but I have had almost nil progression of MS disability.....unless you count the disability of aging..:mad:

I have said and I still say, that, if you have been DXed with MS and you don't suspect anything else, or are in a Trial, an MRI is redundant, useless, unnecessary and expensive..:wink:

Not sure how I feel about this. I can see myself not going every year but I don't know that I'd feel good about never getting a brain MRI again, even if the reason is just because I'm curious! But I do see your point! Especially since I'm not on drugs.

Though, when it comes to the orbits, I don't agree. My first follow-up MRI post ON showed tangible improvement and was helpful to my neuro-ophthalmologist. My next one will be in a week or two and I know there are certain things they hope to see. Don't ask me exactly what they are though -- I forgot! Must be that brain lesion. ;)