Benign multiple sclerosis in Crete

[doublevision1]

I just received this abstract the other day via email, thought I'd share in light of the current discussion re: 'benign' MS.  For the purposes of this study, it apears that >10 yrs following disease onset with no or minimal disability was the criteria for mild/benign MS.


Benign multiple sclerosis in Crete

V Mastorodemos1, H Nikolakaki2, M Tzagournissakis1, D Kotzamani1, T Panou1, C Spanaki1, G Klados3, T Maris4, E Kontolaimaki5, K Psaroudaki5, G Chlouverakis6, G Georgakakis2, and A Plaitakis1*
1 Department of Neurology and the Neurology Service of the University Hospital, School of Health Sciences, University of Crete, Heraklion, Crete, Greece
2 2nd Neurology Department General Hospital, Chania, Crete, Greece
3 Venizeleio General Hospital, Heraklion, Crete, Greece
4 Venizeleio General Hospital, Heraklion, Crete, Greece/1st Neurology Department, General Hospital, Chania, Crete, Greece
5 Private Practice
6 Department of Biostatistics, School of Health Sciences, University of Crete, Heraklion, Crete, Greece

Mult Scler published 17 March 2010, 10.1177/1352458510364631

http:// msj. sagepub . com /cgi/content/abstract/1352458510364631v1

* To whom correspondence should be addressed. E-mail: plaitak @ med.uoc.gr


ABSTRACT

Our objective was to study multiple sclerosis on Crete, an island of 0.6 million inhabitants sharing a similar genetic background and the same environment. Case ascertainment was achieved using the MS Epidemiology Program Project of Crete.

The diagnosis and classification of multiple sclerosis were made by established clinical and magnetic resonance imaging criteria, and disease evolution was assessed by periodic evaluations. Thorough clinical and laboratory evaluations were conducted; a detailed history, including a questionnaire of 36 items, was taken. Data obtained were analysed for possible interaction with disease prognosis.

We identified 587 cases of multiple sclerosis (F:M = 1.6), >90% of which were of Cretan origin from both parental lines. Age at onset was 31.5 ± 10.3 years (mean ± SD) and disease duration 12.7 ± 9.1 years.   About 84.6% had relapsing remitting multiple sclerosis, 9.4% primary progressive multiple sclerosis and 6% clinically isolated syndrome.

Nearly 40% of our multiple sclerosis patients with disease duration >10 years (mean = 16.2 ± 5.3 years) remained with no or mild disability (Expanded Disability Status Scale [EDSS]  3). Also, about 30% of patients with relapsing remitting multiple sclerosis showed benign disease evolution (EDSS  3) more than 20 years (mean = 24.0 ± 3.3) after onset.

Factors predisposing to benign multiple sclerosis included younger age at onset, shorter disease duration and a lower number of relapses. We conclude that a substantial proportion of patients with multiple sclerosis from Crete follow a rather benign disease course, and this may relate to the genetic background of the population and/or to environmental factors.

[shoshin]

I also find it interesting that they define EDSS 3 as benign. Since I started a clinical trial almost two years ago, my EDSS has cycled between 3 and 3.5 and I definitely don't find the impact of MS on my life to be benign. Benign makes it sound like no significant impact. In fact, I often feel like Sisyphus in my daily life and seem to be continually having to adapt to losses of ability. I have read that some neuros think benign should be redefined down to an EDSS of 2 as in the abstract that Tonya shared. Has anyone actually asked these patients if they feel like their MS is benign? Plus, as Quix points out, the EDSS is skewed to emphasize problems with walking, which aren't everyone's most significant challenge.

sho

[tonyad]

  Here is what I know (have read) about The So called "Benign MS"

Definition: Describes a type of relapsing-remitting multiple sclerosis in which few relapses occur. These relapses tend to produce sensory symptoms, which go away and leave very little or no residual damage or disability.
There is also debate on the topic of exactly how to define benign MS, but some researchers propose a definition of benign MS as people who have had MS for at least 10 years and who have an Expanded Disability Status Scale (EDSS) score of 2.0 or less.
Many neurologists and researchers do not use the term "benign MS," as there is so much debate and controversy over the exact definition and numbers of people that could be classified as having it.

Hope that helps :)
~Tonya

[Quixotic1]

Well, that is interesting, but still I have to look at it from another perspective besides the fact that they looked at a very narrowly confined grroup both with respect to genetics and environment.

We have seen multiple studies looking at the population of people who had already been deemed "benign".   In one large study from Spain (a much more diverse population) 29% of the benign patients required assistance in walking by twenty years after onset.  That is not benign.  I am just on the border of requiring assistance to walk and I feel very disabled.  Moving to a cane or walker is not something you do after just a mild problem.

In another study they found that about a third of people with "Benign MS" had  measurably lower cognition at 20 years.  And half of those the cognitive deficits were labeled "significant."  

Of course there could be overlap between the two groups - they were different studies done in different places.  But, I consider a neither faltering brain nor needing assistance to walk signs of a benign process.  We also don't know how much of that progression of disability occurred in the second decade of disease.

I would take this study with a large grain of sea salt unless you are a Cretan in Crete.

The majority of even that population was NOT assessed as benign.  

Further, it is important to remember that the Expanded Disability Status Scale is heavily focused on walking.  It does not address cognition at all.

I still argue that it is dangerous for a physician to look at features early in the disease and then argue that the patient has a good likelihood of remaining with little disability progression.  Yes, there are factors that would sway the risk, but that thinking is what led the Mayo to conclude a few years ago that people who looked like they would have a benign course should be watched and NOT treated with a DMD.  Later if they showed deterioration a DMD could be started.  Only when all the studies showed that the DMDs were more effective the EARLIER in the disease they were given, did the Mayo back off their stance.

At this point we can say that someone had Benign MS only after they die and we see that they did not accrue much disability.  They may be having a benign "course" at one time or another, but the MonSter cvan always rear it's ugly head and do a lot of damage very fast.

There are plenty of people on the forum who have told us that they had many years of not much disease activity, only to be slapped in the face with a rapidly progressing course later.

I understand why the field is looking for the firm signs that a person's disease will be mild or not.  It would save a lot in terms of worry, hassle and dollars.  However, I worry, that bureaucracies will dole out the DMDs here on the basis of the relative risk of worse disease like they do in some countries.

Quix