Benign MS?

On my last visit, my neuro and I discussed my situation and how I'm still mobile despite having practically all the symptoms (except double vision, blindness and immobility) ... but they because they don't present constantly it's never fully incapacitating.  So he said there's a study that says it could be "benign" but he wasn't so sure that wasn't just more "mild," or that my physical conditioning, limberness, pain tolerance etc might have more bearing etc on my symptoms tolerance. 

So I did a little looking around and found this article and was surprised that it's actually a term being used now... "benign" MS... almost sounds oxymoronic to me... (if that's not a word, then I made it up to mean it sounds like an oxymoron) :) How can a progressive disease be benign which I always thought meant harmless? There's nothing HARMLESS feeling about what I've been feeling or what I read everyone going thru...

Anyhow here's the link to the article I found (on the Natiional MS site) and I was just curous what other's thoughts were.

Here we go, found it and got it right.... I hope :)

http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=140

Crud, I can't get it to work either... I thought I posted the link correctly to the forum but it didn't go thru...

Can't retrack it for some reason either... but here's another link to a site that explains it kinda like my doc was saying but doesn't really feel like it's "benign" ... I'm inclined to agree with you uppity... I think the benign term is because most of the symptoms are so hidden... but still happening...

here's the site address (I'm not linking it, copy and paste) :) http://www.thjuland.net/multiple-sclerosis.html#Benign 

Ok, so it worked anyhow and then it worked when I went back on the other one, heck the longer I'm around forums the longer I get stumped too!

I just read the article (for reasons unknown to me ...computers are a mysterious thing..the link worked just fine rig ht now).

Anyway...as *I* read the article, the National MS Society is suggesting that indeed there isn't a "benign" MS. If you carefullly read the article, 50% of the people first labeled "benign" were seriously impaired by the end of the study, and another group were at least "moderately" impaired...suggesting that indeed MS is NOT "benign", that disability can and does happen, and happen frequently enough that whatever preventive measures are available to us ought to be taken.

I'm not a gambler.  I've never so much as bought a lottery ticket; don't travel to Los Vegas, or for that matter to the Indian Casinos in my state.  Only "chances" I've ever bought are the $1 or $2 "chances" at a local charity raffle.  If I'm not willing to spend money gambling, why would I want to gamble that my course of MS might be "benign"??  (A rhetorical question because of course I do have MS, and it has never presented itself as benign...I had multiple and serious exacerbations early on.)  I tell people -- hey, I know what this disease can do.  I'm proof.  Fortunately I'm still alive to talk about it. Why take the chance????

But then,

I agree, Gretchen, Crud says it all for me alot... the way I feel, when I goof up... and the reason the link is working is cos I edited it to ... sorry but I try to do the forum "insert link" thing when I did the link and it failed so then I just copied and pasted the link address and it became a link! Go figure... :)

But yeah, both of you got what I got out of it too, basically that "benign" isn't so benign after a while... and I think though I'm still mobile, it's so relative... for so long so many doctors just ignored the complaints, or poohed them off to "you're older" "you're out of shape" "you're overweight now" etc etc etc... that I just flat began to ignore so many symptoms that it just became second nature to adjust and cope. Until something major enough to get my GP's attention (it's always about timing! cos she could actually see for herself the problem with my right hand - no motor control and tremors)... that sent me to the neuro.

Now looking back, my goodness, I can't believe how many times, how many situations I thought it was "flu", or hubby thought I was getting sick but I never did, just felt so confounded awful, and the weakness, tripping, limping, pain, etc... heck, that's why now I wonder just what is an exacerbation because they sound like "normal" life most of the time to me on the roller coaster I've been on for so long!

That's why when he mentioned 'benign" it fascinated me though he chuckled about it commenting he never thought there was anything particularly "benign" about it either...

Uppity & Gretchen, I'm not a gambler either... if I need a med to prevent further harm, then so be it... if I can stay conservative and keep monitoring it, then I'll do that... I'm good with whatever... just want a course of action and knowing finally someone knows whats wrong. I think the worst part of all is remembering the way I was before all this came on... and age had nothing to do with it. ;)

So "benign" still pretty much means what R & R means for the most part... mild, goes into remission, doesn't totally debilitate at first... then it progresses... like the article said, probably not much "benign" to really discover about MS.

All I can hope for then is to manage what's happening now and pray for a lot of mild years... deal with what's happening and keep learning from great experience being shared.