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D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 5/28/2008 8:59 PM (GMT -6)   
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 :)
 

Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~

Post Edited (D'awesome) : 5/29/2008 5:57:46 AM (GMT-6)


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 5/29/2008 4:22 AM (GMT -6)   

I can't get your link to work..and don't have time right now to go over to the National MS site to find this..but I will!

I don't think that medically "benign" means "harmless", necessarily. You hear about people with "benign" brain tumors..and generally it means that it's "not cancerous", "not likely to kill them as quickly as a malignant" brain tumor...but not good.

"Mild" seems more appropriate.  I think given the side effects of so many of the meds that we have to take for MS, maybe doctors are getting reluctant to prescribe those meds for folks like you who do have "relatively" mild symptoms, not significant disabilty, or where the disease, while it may be progressing, seems to be progressing rather slowly?

I don't know. I need to find the article to see just how it describes this.


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 5/29/2008 5:55 AM (GMT -6)   
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!


Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~

Post Edited (D'awesome) : 5/29/2008 5:58:22 AM (GMT-6)


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3523
   Posted 5/29/2008 7:58 AM (GMT -6)   

Hey Deb,

Don't you love the word "crud" ?  It is so funny yet it says it all!  Your first link seems to be working now.  It must have been a temporary glitch.  Benign MS is a very intersting topic.  It offers some hope.  It is also quite rare and most doctors won't give a diagnosis of "benign" until you have gone 15 years without mobility issues.  It also means that you return to normal between flares meaning no residuals. 

Love and prayers,


Gretchen       co-moderator MS board       diagnosed with MS July 2006


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 5/29/2008 2:05 PM (GMT -6)   

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 am not a doctor, nor health professional, and don't pretend to be one, here.....


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3523
   Posted 5/29/2008 3:31 PM (GMT -6)   

Yeah that is pretty much I message I got with my google search of "benign MS".  One study said it might better be described as a spectrum where some are only slightly affected and others are severely affected.  And the bottom line is that there is no way to predict who will be only slightly impaired and who is going to get slammed.  I am like you Cat, I am not a gambler, I am glad to know for sure what this is and I am glad to be attempting to slow it down by getting treatment early and staying on that treatment. 

Most studies and article say that after enough time has passed, most people do progress and many of those will need walking aids or more.  It seems that benign MS may simply be a slow start to a more typical progression of MS. 

Love and prayers,


Gretchen       co-moderator MS board       diagnosed with MS July 2006


D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 5/29/2008 8:26 PM (GMT -6)   
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. ;)
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~


Motown John
Regular Member


Date Joined Jun 2005
Total Posts : 475
   Posted 5/31/2008 1:34 PM (GMT -6)   
Saturday p.m.
 
Good afternoon:
 
I was dx'ed in 1987.  Beneign was me up until about 5 years
ago.
 
Then a cane.  Then a walker. 
 
Now I am in a motorized wheelchair.
 
As it is.  John
DX'ed June 21st, 1987
 


D'awesome
Regular Member


Date Joined Oct 2007
Total Posts : 343
   Posted 6/1/2008 6:09 AM (GMT -6)   
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.
Fear knocked ~ Faith Answered ~ No one was there! :)
 ~ Ephesians 6:13 ~  * ~ Psalm 27:1 ~

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