[Bearygood]

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? )

[SandyC]

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.

[dmplaura]

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

[Bearygood]

Originally Posted by SandyC

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.

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!

[SandyC]

Originally Posted by Bearygood

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. 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.

[Bearygood]

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.

[AfterMyNap]

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.

[jackD]

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.


MS is a TWO STAGE DISEASE!!!!

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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[doydie]

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.

[ewizabeth]

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.