How do they define benign MS? Where do they draw the line between say not-very-active RRMS and benign. There seems to be as many different definitions as there are web sites. If a person had few exacerbations that were as many as 18 months apart and totally recovered, would that be considered benign? Add an ABC treatment to that...hopefully fewer and/or farther between exacerbations. Go off the ABC to see what happens....I DON'T THINK SO!
Your thoughts all?
At the time I was just over 15 year with MS and this is meant to be the benchmark for a benign course. I have had about 5-6 relapses in 15 years but only two that caused any major symptom - iritis at 23 (form of optic neuritis) and L'hermittes at 36. I have no residual symptoms. A relapse means slowing down but not stopping work and lasts about two -four weeks. Until three years ago they didn't even last the weekend.
I met a woman the other week, married to my boyfriend's Great Uncle. She was diagnosed with MS at 25 and is now 70. She has had no attacks in that whole time. Nothing. Has she got benign MS? I wonder if she has MS at all. At the time she was diagnosed a hot bath was the modus operandi. We now know that hot baths don't just predict MS and I think she was misdiagnosed. How many people are in this category and are therefore labelled benign when it is a misdiagnosis.
Also, various long term studies have recently shown that so called benign MS occurs in much smaller population than once thought, and only 10% of this small population will remain benign at 30 years.
My guess is that in many of the benign cases the person dies before the MS becomes progressive.
I don't like the term benign, it gives people a false sense of security and you can't take anything for granted with MS.
I also don't like boxes - the MS I have is just whatever it is right now. I can't predict the future so I won't even bother trying. People lose so much by not living in the present. Not just people with MS but those with other illnesses, financial worries, the lonely etc etc.
I finally got the drug by kicking up a huge fuss and I intend staying until something better comes along.
I too am anxious to see how the Antegren pans out.
I was given a diagnosis of RRMS 7 or 8 weeks ago and I remember thinking then and spending some time trying to convince myself that I was "lucky" not to have SPMS or PPMS. My view has changed quite a lot - thanks I must say to reading contributions on this site - isn't it the case that the condition is so variable that to try to set a discrete set of categories is not a true view of life with MS. And, moreover, by accepting those categories I can only worry about when/if I'll one day land in another. (It may be administratively useful to group people with like symptoms together for, say, the purpose of 2xblind trials.)
My thinking now is that my symptoms are a realisation of one point on a continuum of possible conditions. That is to say each of us with MS are on the same path but our experience of it differs in the amplitude and frequency of the relapses, and the time it will take to move to a given (bad) state. The devil of it, it seems to me, is that none of these "parameters" are knowable or deducible - yet!
(Sorry if that sounds garbled - I haven't had too long to focus my thoughts.)
From what I have read and my conversations with neurologists the diagnosis is never given before 15 years, even then, most MS specialist neuros these days would not use the term.
I would be worried about her too. I have only two new lesions from years ago on my last MRI 3 months ago* but my neuro still strongly recommended I go on one of the immune modulators.
As there are drugs available, they may not be a solution but until something better comes along, I would have to be daft to take the very-very- small chance that I won't progress as reason enough not to take anything.
*what can be seen anyway as you need an FMRI to really see the complete picture. This is probably one of the reasons some people do not have any lesions on MRI - the MRI is simply not powerful enough to see the really small ones
This link below is to the longest and possibly biggest MS study concerning what is benign MS and comes up with very different results to the Mayo and subscribes to the earlier treatment the better philosophy
Scroll down to Benign MS part
'Conclusions: In the population of BMS defined as either EDSS <=2 or EDSS <=3 at 10 y, a majority of these patients had a worsening of their disability when they are followed at 20 and 30 y and so did not deserve the term of benign MS. Benign MS is a questionable entity.'
I am wary of using the EDSS as the singular measure of disability in MS. According the EDSS my level of disability has only twice gone above 0.0 and that was to only 1.0.
Does this mean I have benign MS? Maybe to some neuros and not to others, maybe to some people who look on from the outside but not to me. I would be pretty cross with myself if I lulled myself in to believing I did because that would lead, for me, to complacency. Once you stop making the effort to fight then you stop living the best that you can whatever the box people put you into.
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This is an article about benign MS from the Mayo clinic.
Good article GWS...everyone should read, actually gives those of us with a low disability score some piece of mind as to what the future MAY hold.
There are too many studies and anecdotal experiences that contradict this to make me feel peaceful. And I'm coming up to 16 year with an 0.0 EDSS score.
A girl I went to college with developed MS when she was 25, she was fine for the first 7 years - only the one relapse which she recovered from very quickly.
Then boom - down hill rapidly, she is now double incontinent, in a wheel chair and can hardly speak. But I guess she would have been said to have benign MS according to the MAYO! MS is just too damn unpredictable to take chances with.
I hope it does bring comfort to people but I hope it doesn't bring complacency.
I'm not prepared to play Russian Roulette with my brain, it is too important to me. So I will continue taking copaxone and a vast amount of anti-oxidants and other supplements until something better comes along.
Interesting reading from Mayo though...........that's what I really meant.
Doing what I can to stay well!
I am extremely lucky, in having no observable physical symptoms, other than perhaps some short term memory loss. I want to do everything I can to keep things that way. Looking forward to Antegren in '05 and Aimspro, at some future point, but I will be doing my daily Copaxone thing until the other meds come along.
Jay in L.A.