News flash! officially there is NO BENIGN MS

[Lulu54]

'We have talked about this  over and over - there is no such thing as Benign MS and now I have the scientific clout behind me to prove it...

A group of scientists updated "Defining the clinical course of multiple sclerosis" from 1996 and it now very clearly says that benign MS is not its own phenotype (observable traits)- and  the word benign could be only applied retrospectively.  In other words, as we have said for years, they can only know if we have benign MS on the autopsy table.

There is a lot more in this study - which was done by over 30 internationally recognized experts in MS.  They eliminate Progressive Relapsing MS as a separate phenotype and say it is a form of PPMS.

They added modifiers to the types of MS and now we have -

CIS has been added as its own phenotype of MS
and can be  CIS Active or CIS Not Active

Relapsing Remitting MS (RRMS) should now be referred to as -

RRMS Active or  RRMS Not Active

Secondary Progressive MS and Primary Progressive MS now share the same modifiers and can be-

Active and with progression
Active but without progression
Not active but with progression
Not active and without progression (stable disease)


These name labels will help even further with selecting people for clinical trials, understanding those results and our doctors selecting treatments.  There is a ton of good stuff in this paper and I encourage all of you to take the time to read it.  

http://www.neurology.org/content/early/2014/05/28/WNL.0000000000000560.full.pdf+html.

I also wrote a summary for my blog - drop me a PM if you would like that link as well.

~laura

[kwarendorf]

It seems to me that "benign MS" Is used more often by non-MS neuros. It allows them to justify retaining patien while doing nothing. It further seems to me that this article highlights ther individual nature of MS.They trying to create labels for something that has over 2,000,000 unique variations :-)

No doubt that 16 years from this "ruling" there will be another gathering and a new set of labels. I realize the importance of categories as relates to research etc., but MS, like time, marches on regardless of what we call it.

From this article, in additgion to the banishment of benign, officialy adding CIS to the family is a step forward...

Kyle

[PastorDan]

Well, ess, you said what I was thinking better than I could.  My (M)ystery (S)ickness flares up, so I call the neuro's appointment team.  Three weeks if I'm lucky.  By that time, I am walking fairly straight again.  Those two things that have to happen to show dissemination in time and space have to be OBJECTIVE, i.e., verifiable via laboratory tests or (especially) imaging.  Patients reported symptoms, no matter how debilitating, just don't count.  That's why it so often feels like I am not being taken seriously.

[essdipity]

Gotta watch myself when I post on so little sleep. I meant benign tumor, not benigh cancer.

[essdipity]

Deebs, I think most neuros would agree with what yours answered, but some don't, and some of these can be quite vocal. That lends an aura of sanction to this odious term, which I think should be thrown out of the medical lexicon for most purposes.

Even a benign cancer can kill you if it gets big enough.

ess

[doublevision1]

When my last neuro dx'ed me seven years ago, I asked hopefully and naively (with severe diplopia, nystagmus, severe ms hug, all limbs numb and pins and needles, severe vertigo, weakness, debilitating fatigue) if I might have benign MS?

He said nope, no such thing.

[supermum_ms]

Hey Laura,

Wouldn't it be great if 'benign MS' which we'd already noted as a problematic term and still being incorrectly used in the living, was a thing of the past and never to happen to another living MSer but I'm not sure if i'm getting the same understanding though........

"Benign and malignant MS. The terms benign and malignant MS are not MS phenotype descriptions per se, but rather were intended to provide an indication of disease severity over time and were described "by consensus" These terms can, in theory, apply to any MS phenotype, depending on the degree of activity over time or impairment/disability at any given point in time. These terms, especially benign, which should always be a retrospective determination, are often misunderstood and misused. In a long term disease like MS, the severity and activity of the disease can change significantly and unpredictably. We recommend these terms be used with caution."

...........doesn't that still leave the term open to interpretation, if 'theoretically' they can still apply to any MS phenotype?

and if you look at the 'discussion section' bullet point it only says " The terms "benign" and "malignant" disease are often misused and should be used with caution." which i wouldn't think is definitive enough to stop neuro's from only using these terms in retrospective determination ie autopsy.

I also got the impression that the patient's clinical signs of activity or progression was still not being taken into account, i didn't see it included in the diagnostic evidence with these proposed changes in determining the varied types of MS. The MRI findings, looked to me, to be once again the main information being used for these phenotypes and as we know from prior research, MRI's don't capture everything, timing etc. I was expecting to read more about the patients clinical signs, considering in the beginning it said.......

"When proposed, it was noted that these clinical course descriptions were based on subjective views of MS experts and lacked objective biological support. There was insufficient knowledge to confidently link MS with MRI findings and biological and other surrogate markers for disease course was lacking."

hmmmm at the end of the day, what this article is highlighting to me is the acknowledgement that the type of MS a person is diagnosed with, if MS is active or inactive etc is very subjective and based solely on the neurologists opinion and not 'as yet' a scientific model the neuro's are following.

Good read though lol i'm not sure it's answered the questions or just created more scope for confusion and still leaves the door open to misinterpret........

Cheers............JJ      
        

[essdipity]

This is an interesting read, so thanks for calling it to our collective attention. It's still pretty much a proposal, though. I'm wondering when and if the general MS neurology community will be on board with it. So many decisions have been made, especially medication-wise, based on the 'old' approach, and bureaucracy moves at a snail's pace, as we all know.

I do have some thoughts and comments, based on the report and what you wrote.

For one, hooray for the prospective demise of 'benign.' What an arrogant term anyway. Very often I've read about people terribly disrupted in several aspects of their lives because of MS, but since their 'disability' was measured purely on their 'walkability,' their disease has been labelled benign. I'd love to see many of these labeling neuros live one day in the shoes of such MSers, and I hope they soon won't have the official clout to call it that.

I don't know that I agree, though, that 'benign' can be applied only at autopsy. If someone has lived a long life with a relatively mild course, he or she can call it benign before the actual end. But from another perspective, even the actual diagnosis of MS is technically theoretical unless autopsy shows MS lesions. Long ago I was told the diagnosis proves accurate then at a rate of 95%.

I am concerned about terminology on active/inactive and progressive/stable. These labels are to me much more open to interpretation and subjectivity than the authors indicate. Their definitions are based on testing evidence, in this day and age meaning pretty much solely MRI, and clinical evidence--what is found during office visits. Even assuming every neuro is superb at neuro examination, an idea which must be taken on faith, if nothing new shows up either way, MS, once diagnosed, would subsequently fall into the inactive and/or non-progressing slots.

Where would that leave those who have decent if not perfect MS remissions and report symptom improvement, who then get worse attacks of pretty much the old symptoms? If these are largely sensory, there's no way to measure them subjectively. MRIs might be unchanged, or previously bad enough so that new damage is difficult to see, and office evaluations of weakness, reflexes, etc., might not show much new either. A patient who is suffering significantly from an MS relapse officially would officially be inactive and non-progressing? Would that become a reason to withhold treatment meds?

I may well be misunderstanding this whole concept, both old and new, and if I am I hope someone will clarify it. It's always been difficult for me to see the difference between relapses and disease progression as it is.

Not surprisingly, I have a compelling personal interest in this scenario. For almost 5 months I've been in what I consider to be a relapse, by far my worst ever in terms of impact on my life. But my current neuro  :-(  tells me it is only a pseudo-exacerbation, because the new MRIs are stable. In his view, only a truly worse set of images, and/or worse weakness, etc., would constitute a real relapse. This was a new idea to me, and I've spent a lot of time and effort trying to understand it. Once again, perhaps I've misunderstood all along. But in the real world of living with definite MS, I've felt wretched for months. I'm stable? I don't think so.

I hope that others here will soon post their thoughts too. After all, we're the ones living in the trenches.

ess